Our Curving Road

THE END...pretty much:)

2011-02-22T18:47:00.015-05:00

Today we finally heard the words we have been waiting for since Jan 2009. "Delaney shows no signs of ever having Scoliosis" Magic words:) Such a thrill! We hit the end of the road. I say that with a bit of caution, as we will still have to go for x-rays once a year to be sure we are holding steady. And when Delaney hits the age of about 12 they watch much more closely until she is done growing. During the teen years and all the growing children do, sometimes Scoliosis returns. But right now, we celebrate!! No more BRACE! No more anesthesia! No more worry about her ever being fully cured...because SHE IS!!! What a blessing!

I think back to that one horrible day. The one where the doctor said "There is no cure" and proceeded to tell us the horrors that Delaney's life would bring. I think about laying in bed that night feeling helpless that I couldn't help my little girl. That we had a long road ahead of us. Worse that her life would be full of pain & suffering and would probably end sooner than any parent should ever have to think about.

And then there was hope.

A doctor on the other side of world had created a procedure to cure Infantile Scoliosis. A simple procedure, in fact. Non invasive. And an amazing Mom who's daughter needed this procedure fought to bring awareness here to America. Shriner's Hospitals for Children are the leaders in treating Infantile Scoliosis with the CAST procedure. Because of them that dark day turned into cautious hope. As she healed, each doctors appointment brightened that Hope.

To me this Mother, Dr. Min H. Mehta, & Shriner's Hospitals are hero's. I say a special prayer for them everyday for saving Delaney's life and the lives of countless other children. We owe so much to them! And a very special Thank You to all our wonderful family & friends who offered support, meals, phone calls, compassion and most of all prayers! Delaney is proof that prayer works! Today we Celebrate!

"One of our Miracle Stories"....

2010-04-29T08:41:00.000-04:00

That's what the doctor said yesterday after Delaney's procedure....Delaney is one of our miracle stories. As a parent, those words meant the world to me! When we started this process, the diagnosis was grim. We pictured our precious daughter in a brace until she was a teenager and able to handle spinal surgery which may not even have corrected her. She could have had major deformities and health problems from her scoliosis for the rest of her life. A short 15 months later she is cured! She is healthy & happy and will not have all the problems we envisioned. We owe it all to Shriner's Hospital for Children & the wonderful website that gave us hope, infantilescoliosis.org.

I will say, it's almost a love/hate relationship with Shriners. NO ONE wants to see their child go through what Delaney went through yesterday. When she looked at me with her tear filled brown eyes screaming Mommy, I wanted to snatch her up and take her home...my heart said protect her, my head said this is for her to be healthy. My head won and my heart broke. Guess that's all part of being a parent.

Starting at the beginning of our LONG 24hours...we checked into our hotel in Erie & ordered room service. Delaney had slept the whole 2 hour car ride there, so she stayed up until 10. She had so much fun. That girl can find adventure anywhere she goes...she thought the hotel room was great. She ran around laughing & playing like she has never been out of the house before. She has so much personality, she constantly has me laughing. She did fall & hit her forehead on the bed, which gave her a big lovely bruise. She cried for about a minute & was up having fun again. Always the trooper...

So 6am started our 12 hours of torture. We got settled into her room and of course the nurses came & took all her vitals and ask us the hundred questions they have to ask before each "surgery". Then we headed to pre op to talk to the doctor & anesthesiologist. Today they were doing a mold of her body to give to the prosthetics dept to make her brace. They took her to the OR at about 9:45 and by 10:30 we were in post op with her. After being put under she is always so out of it for a while, very disoriented and crying. She was still hooked up to the IV and all the monitors but they do let us hold her. We were in post op for about a half hour until all her vitals are stable and she was doing well. Then we were taken to her room where the nurse came in and took all her vitals (which of course she cried through). They won't take the IV out until she has had some juice but she was to tired to drink and fell asleep in my arms. So we just sat there while she slept for about an hour. When she finally woke up she drank lots, so they took out the IV and we were allowed to leave to get lunch. By this point we couldn't get Delaney out of there fast enough...she had had enough of all the poking & prodding. She cried until we got in the car. We were supposed to go to prosthetics at 3 to be fitted. I think this was the worst part of the day. As soon as the put the brace on her she threw up everywhere, and apparently the guy couldn't handle it so he LEFT. He just left the room and didn't come back. So poor Delaney is in this brace that hasn't been fitted properly yet so it's very tight, she just threw up and she is screaming. That was the point that I just wanted to leave, just rip that brace off and never come back. It took about 10 minutes for someone else to come back and mark where the brace needed adjusting. So we finally got the brace to fit right after about 4 adjustments and lots of tears (Delaneys & mine). Then back to Shriners to xray her in her brace to make sure it would hold her spine straight. We headed home at about 5:15...whew long day! Poor Delaney didn't even seem like the same kid, she looked beat up, red eyes, exhausted, bruises on her arms from IV (plus the lovely bruise on her forehead), she breaks out from the tape they use so her face and arms had red rashes. And she just sat there staring with her head hanging. Definitely NOT my fun loving Delaney. It was a pathetic sight.

Didn't realize this would get so long, so I will get to the good news. We are going back on Aug 5th to make sure she is still good, just xrays this time...and if she is still holding straight they will start weaning her off the brace!!! That is the miracle part!! We thought she would be in the brace AT LEAST until she was 5 years old...but she has done so well, corrected so quickly & had no set backs that she can wean off now at 2 years old!! We have been so lucky because so many kids don't even get diagnosed until 2 or later..and here she is, just turned 2 and weaning out of hers!!

God bless infantilescoliosis.org, Shriner's Hospitals for Children, Dr. Patrick Cahill and all the wonderful staff at Shriners. You gave our daughter her life and I could never repay you for that! You are angels sent right from GOD!!!!!

Great news and a new friend!

2010-02-27T08:44:00.002-05:00

On February 19th we had Delaney's checkup at Shriners. I have to confess I was nervous. Delaney's brace, which she got last June was so tight. She was miserable all the time and could hardly eat when she had it on. So, probably since Christmas we have been letting her go without it a lot more than we should. Since it didn't fit the same I was also afraid having it on and pressing her back in the wrong place would do more harm than good...so needless to say we were pretty lax with it. So this appointment was especially important because I was afraid of her regressing.

Wonderfully, not only did she not regress but she IMPROVED!!! Which is amazing since she was out of it so much. She actually went from about 9 degrees to 3 degrees! What a little miracle she is. You could tell by Dr. Cahill's face that he was very pleased. So pleased, in fact that Delaney only has to wear the brace at night from now on:) To put this into perspective, initially, she was supposed to be in a CAST for 2 years then a brace 23 hrs a day until she was a teenager. Instead, our girl wore a cast for 4 months and the brace 23 hrs a day for about 9 months. She is at the place with this that we thought she would get to as a teenager! AMAZING! We have been so blessed.

They did do some brace adjustments to make it fit better, so that we could get more use out of it. She is scheduled to have a new mold and brace (which she has to be put under to do) made at the end of May. I always hate those trips, they are so long and grueling...but so worth it!

Just a side note, Delaney has a small blankie with a bunny head that has been "her" blankie for ever. She sleeps with it and it is very loved. Well while getting her xray..she was very upset, so they gave her this cute little Panda Bear. It has now joined ranks with blankie. She hasn't let it out of her site since she got it:) So we now have 2 "lovies" Bear, she calls him, was her comfort at Shriners and is now part of our family:)

Here is a picture of her at Shriners with "bear" and in the smallest gown they had. She looked so cute:)

It's been a year!

2010-01-23T10:01:00.002-05:00

One year ago today Delaney was diagnosed...worst day of my life! Sorry I haven't updated. My apologies to everyone. I guess maybe it is a good thing I haven't written. No news is good news, right?

Last June, Delaney was officially taken out of the cast and fitted for a brace. Her curve was "unmeasurable" meaning it was below 10 degrees. They still had to put her under to get the mold for the brace. After the "surgery" we took the mold down the street where they made her new brace. After it was made and fitted to her, we headed back to Shriner's so they could x-ray her and make sure the brace was holding her spine straight. It was holding perfectly but it was rubbing her in some spots, so back to Prosthetics for some tweaking...whew, what a LONG day! Her brace looks just as uncomfortable as the body cast..very tight! It's very "fashionable" for a brace..LOL! It has pink & purple butterflies all over it. While she can't appreciate that right now, Mackenzie sure does:) Here she is in her new brace...

Clearly, we still have the same diapering issues...her little crack is always hanging out:) Our biggest concern is that she hardly eats...I'm guessing because the brace is so tight. She is supposed to wear it 23 hours a day...but on special occasions we have let her out for a day. She always eats so much better with it off. At 22 months she weighs a mere 18lbs 14 oz, but she has been better lately so we are hoping she will start growing soon!

I promise to keep updating. We have an appt with Shriner's on Feb 19th and I'm betting she will need to get a new brace as she is finally growing out of this one. But almost daily I am running my fingers up her spine and so far...still feels straight!! Thank you all for your prayers..it worked!

X-rays speak a thousand words.

2009-06-04T08:46:00.013-04:00

I remember the exact moment I saw Delaney's first x-ray. It is devastating to see it there in black and white. To see what is happening inside our babies tiny body. Thank goodness Michael was with me because once they put that x-ray up on the board I couldn't hear anything the doctor said. I just stood there, tears streaming down my face, staring at that horrible image. The other parents of children with PIS all say the same thing...that first x-ray is engraved on our minds and remains a prick in our hearts forever.

X-rays are kind of like our life line through this. We wait anxiously for each x-ray. It's thrilling and scary at the same time, waiting to see how much progress has been made. We have been lucky and our journey has been significantly shorter than most. And while we still have a long road ahead with bracing and more x-rays, the worst is over, Delaney's spine responded to the casting and she will be cured.

I ordered copies of her last x-ray (April 22th, 2nd casting), we recently received them in the mail and I would like to show her progress. The x-ray at the top is a copy of her first x-ray, at that time they had her at 45 degree curve. (after taken properly at Shriner's, she was actually at 23 degree curve). The picture below on the left is an x-ray of her OUT of her 1st cast before they applied the second one. Her COBB angle was down from 23 degrees to 14 degrees. What a difference!! The picture on the right is an x-ray of her IN the 2nd cast. They got her spine down to ZERO! Just look at that beautiful straight spine!! They consider anything below 10 degrees cured..as most people have some curve to their spine...so they believe this 2nd cast is the final!! Can't wait to see her new x-ray next week and see what her new curve will be. Compared to that first heart wrenching x-ray...that one on the left looks pretty good to me:) Wish us luck next week...pray for wonderful results!!

National Scoliosis Month!

2009-06-01T07:55:00.002-04:00

Infantile Scoliosis affects children under the age of 3. If you have a child under 3 or know someone who does, I strongly encourage you to inform them of this disease. It's not something the pediatrician routinely looks for at their well visits. It is not something parents readily know about. Before I had the girls, I read every book I could get my hands on about babies...I read about their milestones, their growth rate, diaper rash, dressing them for cold, childhood illnesses, what happens at their doctors appts, etc. Not ONCE did I ever read the word Scoliosis. Not once did the pediatrician look at my girls spines. Yet all it takes is a glance or a quick feel down the spine for a doctor to see something is wrong. As a parent, you have no idea this problem lurks around the corner, no one warns you about this disease. When we first noticed Delaney's back looked funny, we thought it was because she was learning to sit up. We thought she just had more muscle on that side. We were wrong. So in honor of National Scoliosis Month, tell everyone you know to check their kids spines. And then check them again EVERY month. This is a very progressive disease, and if caught early can be CURED!

Delaney's 1st year through pictures.

2009-04-27T13:21:00.004-04:00

For Mackenzie's 1st birthday I made a video montage of her first year. It's so fun to just sit down and watch them grow up on video. For each picture you look at, those old, wonderful feelings and memories resurface. It's like going back in time for just a bit. Well, I just finished Delaney's, so I thought I would share it on here. 10 minutes of pictures that sum up her first year. So turn on your volume and watch what her year has been like. They change so fast and grow up to quick. We have had a wonderful year and we're so blessed to have her!!

Make photo slide shows at www.OneTrueMedia.com

Catching up...

2009-04-24T11:00:00.004-04:00

Wow, it's been so busy, I have a lot of catching up to do on this blog. First and foremost, we had our second casting appointment with Shriner's on April 22nd. Right up front, the good news is Delaney's curve went from 23 degrees to 14 degrees out of cast! And with this current cast they have her spinal curve all the way to zero! Such an amazing improvement!! So good in fact that they are sure this will be her last cast. Then we will be moving on to a brace, but more about that later.

Now this 2nd cast went smoother in some ways, but tougher in others. They take the cast off the day before putting the new cast on so their skin can breath some and they can get a bath. So we headed up to Shriner's on Tuesday. We got there about 1:00 and they took us into what would be her room the next day. They did all the pre-op work...weight, questions, temperature, etc. Thankfully she has gained some weight..about 1/2 pound. She was 13.6 lbs when she got her 1st cast, this time she weighed 14.08 lbs. Boy, she's tiny! Then the nurses came in to cut the cast off. This is the part that was terrible...obviously they used the saw that they use to cut all casts off. They chose to cut at the smallest part of the cast, which was the front under the chin and around the bottom at her belly button. So we had to hold her down while they did that and the saw was SO loud. Delaney looked so scared. She screamed her little lungs out. It was heartbreaking!! Then they gave us a 72 hour pass, so we could leave and stay at the hotel and come back the next morning. Quick & easy but not fun!

As soon as she was free of the cast I picked her up and just held on tight!! It was so amazing to hug that little body again! She felt so light in my arms and so warm:) I think we got so used to the cast we almost forgot what it was like just to cuddle a squishy little body. She wasn't about to let go of me...she had her arms and legs wrapped around me and her little fists were clutching my shirt for a long time afterwards. In fact, everyone was joking she looked like a little spider monkey all wrapped around me. Of course it was sad that she was that scared, but at the same time it made me feel good that she knew I would protect her.

Anyway, we went to the hotel and took her swimming and then we went out to eat and back to the room to give her a bath...the first tub bath in 7 weeks. Her skin looked better than I thought it would after they removed the cast. She had more dry, flaky skin than I have ever seen in my life. And it was red in some places, almost like a bruise in the shape of the cast. She only had one small scab that was a pressure point on her left ribs. But, all in all, it looked pretty good. So she had her bath and we lotioned her up and we all went to bed.

Her appointment was 6:30 a.m. and she was the second child in line to have surgery that day, but for whatever reason it took longer than expected for the 1st child's procedure so they didn't
take her back until 10. Which is a looong time for a 1 year old to wait when she's tired and starving...so it wasn't to fun. But at 10 they took her back to be casted. By 11 we were in recovery with her. She did great! So well in fact we were in our own room by 11:30. They immediately came in and petaled and trimmed her cast and by 1:30 we were being discharged. So once it got started it went very fast and she did very well. Mostly we are just sooo pleased with the good news!!! 3 nurses/doctors said they have never had a child only need 2 casts!! We have been very lucky!!

Happy Birthday Delaney Skye!

2009-04-18T14:45:00.001-04:00

Have a wonderful 1st birthday!! Thank you for being my baby and blessing my life! You are an amazing little girl and my life is bettered by having you in it. I wish you all the health & happiness you deserve. And a wonderful, fun & blessed life. Happy birthday my sweet baby girl! Mommy loves you!

Terrible news for Shriner's!

2009-04-02T13:03:00.003-04:00

We got some pretty terrible news today. Thankfully not directly regarding Delaney, but devastating all the same. Our beloved and wonderful Erie Shriner's may be closing their doors, along with 6 other Shriner's out of the 22. Shriner's in Erie is 1 out of only 4 hospitals in the U.S. that does corrective casting for Infantile Scoliosis. They also deal with many orthopedic issues including spinal cord abnormalities, club foot, spina bifida, cerebral palsy, hand & hip disorders, and limb deficiencies. All of which are life altering problems.

If you have read my other posts, you know how much I adore Shriner's. I think what they do for children is AMAZING! The idea that this hospital helps children for free and never turns anyone away is phenomenal. So many people are not aware of all the good they do. I don't think there is enough awareness out there that these are hospitals that run solely on donations. These people are all volunteers who not only give their time and skills to help children, but they become like family. They treat each child individually and with so much kindness and compassion. I believe some of Gods angels work at these hospitals. There are no words to truly describe this wonderful place.

This particular hospital is the only one that told us they could CURE Delaney. Infantile Scoliosis is a potentially fatal and certainly a debilitating issue that is not getting the recognition it deserves. Her prognosis before we ended up at Shriner's was not good. Had we not found them, who knows the path Delaney's (and our) lives would go. But I can bet it would be a hard and horrible road to travel. This hospital is helping children and families survive this horror, and the thought that it may shut down is numbing.

Because Delaney's treatment is only offered at 3 other places in the U.S. we will have to travel to get her the proper care. But what will happen to all the other children this will effect. They either won't get the care they need at all or they will travel hundreds of miles to one of the few Shriner's left. Another bleak alternative for some of the patients is to go to a regular children's hospital where they will pay thousands of dollars for ongoing treatments (and that's if they offer the proper treatment for that child). And I can almost guarantee they will not get the care & attention they get from Shriner's. If you would like to see the article about the closing follow this link...
http://erieathome.com/dct/62/id/324438/mid/148/Shriners-May-Close-Erie-Hospital.aspx

Shriner's has been helping children since 1920. How amazing is that?? You can't tell me that it has stayed open through the depression, and wars and other recessions just to be shut down now. I know the economy sucks, I know everyone is hurting...but so are these kids. I am asking that you give up that morning latte or dinner out or even count all the change you have had in a jar since 1980 and donate it to save this hospital. This is soo important!! Please, please consider what you can give up once or twice and donate that little bit to help. Every cent matters!!

The link to donate to Shriner's Hospital for Children is on the sidebar and I will also provide it below.
If you donate please be sure to specify you want the donation to go to the ERIE, PA Shriner's.

http://erieathome.com/dct/62/id/324438/mid/148/Shriners-May-Close-Erie-Hospital.aspx

Thank you all!

Is it what you thought?

2009-03-13T08:36:00.010-04:00

I know that it is difficult to imagine what Delaney's cast looks like. When people see her in it they either think it's much better than they imagined or much worse. So I thought I would post some pictures of it to help show exactly what it looks like and explain why it looks the way it does. Before they actually apply the cast they put a tank top like shirt on her. The shirt is antimicrobial, which means it inhibits the growth of bacteria, fungi, and viruses. So it helps keep her skin under the cast dry and healthy. Delaney's cast is under the arms, although some can be over the arms or over just one arm depending on the child's curve. It comes all the way down to her pubic bone in the front and the tail bone in the back. Which makes diapering a huge problem. We have to change her much more during the day and each diaper has to be tucked up into the cast. We have already had a couple of leaks...which means we have to pull the t-shirt as far down at the bottom as we can and hand wash it. Then blow it dry. The t-shirt can not be removed so it is already looking a little worn. At night, because she sleeps through the night, we have to have extra protection. We take an overnight maxi pad (recommended by Shriner's) cut in half, we place one half in the diaper and one half sideways at the top of the diaper in back. Then tuck in the pad as far as we can into the cast, pull the diaper up over the cast and tape it in place. So far this method seems to be working.

Back to how the cast looks. The front of the cast is cut out to allow room for her tummy and her ribs so she doesn't develop a chest wall deformity. They also cut a hole in the right side of the back of the cast. Because her curve is to the left, the cast pushes on the left side of her body to straighten it out. So the hole in the right side is to allow room for the ribs to grow to the right. Obviously, you still see the t-shirt under the holes in the cast. As you can see we chose a pink cast for her although not much pink shows. They apply waterproof tape along the bottom of the cast and over the section under her chin to help keep the cast dry. The nurses apply the moleskin petals, which are brown, all around the edges of the cast to make it softer and to help keep it dry. Shriner's gave us extra petals and tape so that we could change out the old as needed. Delaney's cast weighs about 2-1/2 pounds which is about 20% of her body weight, so moving around was difficult at first. But about 6 days later she was back to doing all the things she's always done at the same speed. The hardest thing was probably sitting up. The cast looks very uncomfortable but she has adjusted very well.

I truly feel terrible for the families that have to go through this for long periods of time. It is quite an adjustment. There are so many little things to think about. Diapering, bigger clothes, keeping her cool, keeping her dry etc.. Not to mention watching them struggle to do everyday activities that were so easy for them before. But children are resilient and so strong. Luckily she will not even remember this time, even though I always will.

Part 2: Delaney's 1st cast

2009-03-09T08:18:00.012-04:00

Shriner's is the most amazing hospital I have ever been to. Of course I have been to other children's hospitals and they are great, but Shriner's really goes above and beyond. They took such good care of us. They completely made us comfortable. Every single person there acted like Delaney was the only child in the world. They know how stressful and heart wrenching it is to have your child go through something like this. I just can not say enough about that place.
And the fact that it is free...free so that no child is left behind, no matter their family's circumstance.

So back to Miss Delaney...as we walked through the Recovery Room doors, there she was, the most beautiful baby in the world...screaming her tiny head off. There were 4 nurses around her. Two monitoring her vitals and 2 just trying to comfort her. And covering her body was the horrible cast. The horrible cast that was also the most wonderful thing in the world to us, as it would fix our baby. She still had her IV in and she looked very disoriented. They said crying is good for them right after anesthesia, it gets all the gunk out of their lungs. So I just held her and let her cry. She also received a "surgery present" which was a Raggedy Ann Doll. Of course at that moment she could not care less. The doctor came in at that point and he told us the most wonderful news! He got her spinal curve down from 23 degrees to 10 degrees in the cast! Best of all, she may only need 1 more cast! WOW how far we have come in these 6 weeks.

Delaney was doing so well they sent us up to our room, where I was allowed to breast feed her. As soon as she ate, she was her old self...laughing at Daddy and

watching Dora on T.V. Since she didn't get sick, they came in and removed her I.V., took her temp etc.. She was doing amazingly well. It truly could not have gone better. On a side note, nurses are aloud to give out "treasure chest passes" to kids so they can go to the playroom and take a toy out of the treasure chest. We had 3 nurses each give her separate passes, telling us how brave and strong she was. They were always so encouraging and absolutely wonderful with the children.

Unfortunately, it wasn't over though. A nurse still had to come in and trim and petal the cast. The bottom of the cast comes down to her pubic bone in the front and her tail bone in the back, so they have to cut out sections around the legs so she can sit up right. Also, under the arms was to tight so they trimmed that as well. So we had to hold her down while they trimmed. I have never seen her so mad. I am sure it scared her as it was vibrating the whole cast and it was loud. We also had to hold a blanket in front of her face so the shavings wouldn't get in her eyes. So I am sure she was terrified! Then they do something called "petaling". It's small pieces of flower petal shaped moleskin with adhesive on the back that the nurse put all around the edges of the cast. It helps keep the cast from rubbing her skin raw. We were shown how to change the petals and how to keep the cast clean and dry.

By this time, our dear little Delaney was exhausted! Luckily she had done well enough that they thought we could go home. It was only 1:45 but felt like 8:00 at night. What a long day! We signed all the paperwork, got our next casting date and headed home with our sleeping beauty in the backseat.

Part 1: Delaney's 1st casting

2009-03-08T10:07:00.003-04:00

I know there are some people following the blog who have children with PIS. Some a step or two behind us in our journey, so I will write in some detail about our experience with the first cast. So to begin, our appointment was set for 6:00 a.m. at Shriner's Hospital. Because we are 2 hours from there we stayed the night before in a hotel down the street. Delaney wasn't allowed to eat or drink for 8 hours, although I could breast feed her up to 4 hours before. So I did wake her up at 2:00 a.m. so she wouldn't starve.

When we arrived we were immediately put in our own room and 2 nurses wheeled in 2 computers and started firing questions at us. All the while making us very comfortable. They were amazing with Delaney, offered us drinks, told lots of stories...it was all very calming, considering the circumstance. We were given a pager so they could page us when it was over or if they needed us. Then we undressed Delaney and they took all her vitals (height, weight, head circumference etc..) A nurse brought in the tiniest hospital gown I have ever seen and we put that on her. She looked so small and sweet (see pic).

We were then moved to pre-op where Delaney started to get fussy...she was so hungry and tired. Such a long morning for a baby. In pre-op the 5 people who were her "team" came in individually and discussed their role and what would happen in the operating room. Then a mean nurse (who was actually the nicest nurse I have ever met, but she wanted to take my baby) came and walked us to the Operating Room doors, where we hugged Delaney's soft, warm body and handed her off.

They had told us it would be about an hour, so we headed down to the cafeteria for some coffee and then back to the parents waiting room (which was just across the hall from the o.r.) Maybe 10 minutes later the nurse who was with Delaney all the way through called us from surgery to tell us she went down quickly and they were already casting...she was doing well.
It was amazing how fast it went, maybe 20-30 minutes later they called us again and said we could go into recovery..Delaney was casted and awake.

To be continued...

Light at the end...

2009-03-05T06:36:00.003-05:00

Because I am short on time right now, I just want to give a quick update for all you wonderful people who are following our story. I believe the reason for all of our blessings is the amount of prayers from our amazing friends, family, and even strangers. I will write in detail the process and everything we went through yesterday, but today I will just let you in to our fantastic news. Delaney did amazingly well getting her first cast. Everything went VERY smoothly with her being put under. She did not vomit or get sick in any way. She was a trooper...and is insanely strong! I am so proud of her. The doctors got her curve from 23 degrees down to 10 degrees in the cast. That is amazing!!! But the VERY best part of it all is that they think she may only need 1 more cast!!!!!! That would mean she would only have to be in it for 4 months instead of 1 year. She is very flexible and they were impressed with the amount of correction they got in her first cast, so the doctors are EXTREMELY encouraged. Everything went very fast and so much better than we expected. Her surgery started at 7:45 and we were in our own room by 9:15. Then they released us at 1:45. She just did so well...we are so blessed! The cast weighs about 3 lbs so it is very heavy for her. But she even did much better with adjusting than we could have hoped. When we got home she could still crawl and pull up to standing. Sitting is harder and she falls over a lot. She gets SO mad that she has to support the cast and everything she does is much slower. She has always been very active, so she does cry out in frustration...but she will be back to her old mischievous self very soon. We could not have imagined such success!! It is all because of your prayers!! Thank you all soo much from the bottom of our hearts!

Our special little girl

2009-03-02T13:12:00.009-05:00

We leave tomorrow for Shriner's. Delaney's appointment is at 6:00 a.m. on Wednesday. And while I am excited to get this process started, I am also a nervous wreck! But I am not going to talk about all the bad stuff right now. I am sure there will be plenty of ups and down to come. So today I just want to focus on my sweet little girl. So I am posting a few recent pictures of her. Pictures that make me smile. While these last few weeks have been very stressful and heartbreaking, it has also been a wonderful time. Delaney is at the stage where every day brings about something new. Everyday she explores new places, gets a new tooth, laughs at something funny, or melts my heart with her beautiful grin. Delaney is very laid back and VERY sweet, always full of loveliness. Her face is almost angelic, with it's tiny features and eyes full of innocence. She has been such a pleasant, sweet, enjoyable baby and I feel truly blessed to have her. So before this hard road really begins I am sharing some of her with you....

Miss Hollywood!! Just chillin!

Trying to take her sister baby in the bath. Loving bath time!!

The importance of 2nd opinions.

2009-02-16T08:51:00.005-05:00

Last week, before going to Shriner's, I had to pick up a copy of Delaney's x-ray from the first doctor to take with us. As I was sitting in the waiting room at Shriner's I opened the envelope to take a look at the x-ray one more time. Included in the envelope was the letter from Dr. F (the 1st ortho we saw) to our pediatrician. Basically it was a letter summarizing our visit. As I read the letter I just got madder and madder. Remember this is the doctor who said Delaney's RVAD angle was zero COBB angle was 40 degrees and that all we could do is brace her until she is old enough for spinal fusion surgery. This was also the doctor that I said didn't even touch her during the exam. In fact, he didn't even have us undress her, although Michael did open her shirt to show him because it was to hard to describe the bump. But he barely glanced at her. Here is one of the paragraphs from the doctors letter...

"On physical examination, looking, at her back, she has no hairy patches or dimples over her spine. She has no cafe au lait spots. She definitely has a left sided thoracolumbar type curve, it appears. With a little bit of traction on her, she seems to be fairly flexible. She has excellent range of motion of her shoulders, elbows and wrists bilaterally. She seems to have good strength in them, normal sensation and pulses. There is no swelling or atrophy present and no tenderness palpation. In her lower extremities she has normal range of motion of her hips, knees and ankles. She seems to have good strength, normal sensation and pulses. She has no swelling or atrophy present in them and no tenderness to palpation. She has a negative straight leg raising and no clonus and normal reflexes."

First of all, he was in the room all of 4 minutes. It's not like he was even watching her move around and play. In the letter he says "with a little bit of traction"...what the heck, he didn't even touch her. How would he know she had normal pulses, strength, sensation ect.. No one except the x-ray tech even touched her, and the doctor wasn't in the room for that. He didn't take her diaper off to even look at her lower spine to see if she had "hairy patches, spots, or dimples". How exactly did he come to all these conclusions? Why would his letter to our pediatrician say all of that? Is he a bad doctor or is he so arrogant he thinks he did his best? How many others has this happened to? Just to compare, Dr. Schrantz at Shriner's, had her in her diaper the whole time. Even opening the diaper to look at the base of the spine. He felt her back, checked her hips, moved all her joints, held her hands while she pulled herself up. He twisted her all around checking her spine. How can 2 appointments be SO different?

The thing is, I would have never known about this if I hadn't requested a copy of her records. And everything in this letter is what our pediatrician now thinks is what is going on. Imagine if we hadn't questioned. What if we had taken our doctors word on Delaney's prognosis. I know we all want to trust our doctors. We want to believe they are all knowing and have our best interests at heart. But the truth is, only we have our children's COMPLETE best interests at heart. We should always question, question, question. Get 2nd opinions and 3rd and 4th until we are comfortable with the care we are getting. Especially when it comes to our children. We have to be there voice, we have protect them and always try to do what is best. We are our children's best advocates. So if this has taught us anything, it's get lots of opinions and then go with your gut. We won't ever be afraid to speak up again. As in Delaney's case, it can make all the difference in the world.

Our plan with Shriner's

2009-02-11T08:07:00.005-05:00

Well, where do I start...so much has happened. I will start by saying we ALL ended up with the flu. So our weekend was full of trying to disinfect the house and do LOADS of soiled laundry all while being sick and taking care of 2 sick girls. In fact Michael didn't even get to go to Shriner's with us on Monday because he was still sick (as was Mackenzie). So Mackenzie and Daddy stayed home, while Delaney and Mommy headed to PA. Our appointment was for 12:45, we got there at 12:15 and were told it would be a 2-4 hour wait...ugh! But I wasn't about to go anywhere! So we waited. Delaney was an angel and it really wasn't so bad. We got called back at about 3. Then everything seemed to happen very fast.

I preface this by saying the other 2 doctors we had seen (Crystal Clinic & Cleveland Clinic) only see 1 or 2 cases of PIS every 3-5 years. Shriner's sees about 400 cases a year from children all over the world. So they know what they are doing. The first thing they said was that you can't get a true angle reading on the x-ray if the child is sitting. And of course that was how the other drs had done it...so this doctor had us do more x-rays first. That's when all the good news started happening. Her previous diagnosis was COBB angle (angle of the spine) was 40 degrees with the RVAD (Rib angle from the spine) was 50 degrees. Which is pretty bad. Well, with the new x-ray and doctors who know what they are doing her actual COBB angle is 23 degrees and her RVAD is 18 degrees. WOW WOW WOW!!!! SO much better than we thought. Seems all the prayers for our little Delaney are working some big miracles! They believe she is a good candidate for the casting and that they can completely correct her curve.! Hurray!! THANK GOD!!!

After the appointment, I was introduced to Delaney's "team". Aside from her Ortho Surgeon and her Certified RN, I was introduced to 2 other ladies, her Certified Physical Assistant, and a Care Coordinator who basically takes care of your every need through it all. These 4 people make up the team of professionals we will be working closely with over the course of our journey. I was then shown a video on casting and given a short tour of the surgery wing. They were amazing. They made us feel welcome and comfortable and you could really tell they knew what they were doing. I had such peace about the whole thing. It was such a relief after all these weeks of stress, worry and fear.

Her casting is scheduled for March 4th...3 weeks from today. I am so thankful for this opportunity. What a whirlwind this has been. In 3 (long) weeks, we have come so far. If any of you watched the video (see sidebar), you know that to cast her they have to put her under anaesthetic. Which is the only part that scares me. It's so scary that so many things can go wrong from that. Some of the moms I have been in contact with who's child had casting reported vomiting and or asthma anywhere from a couple days to 2 weeks. So hopefully she won't have any of those reactions. Then they will put her on this special table, and using the table and their hands manipulate her spine and ribs as straight as they can and then apply the cast. So I am sure she will be a little sore after, and I know it can irritate her delicate skin. Dr. Schrantz seems to think that she will need to be in a cast for about 1 year. We will be traveling to PA every 2 months for a new cast to be put on until her spine is straight. So we have a long road and lots of issues that are bound to pop up, but the end result is totally worth it. Our baby girl will be healed!!

The flu on top of it all.

2009-02-06T08:55:00.004-05:00

Well, Mackenzie has the flu, so I am asking that you pray that the rest of us (especially Delaney) don't get it. We are 3 days away from our miracle appointment with Shriner's and can NOT be sick! Wednesday night Mackenzie started vomiting. She got sick about every 20 minutes for 8 hours. I thought she was perking up yesterday afternoon, she even played a little. Then it started again, 3 times last night and 3 times this morning. We just can not afford for Delaney to be sick for a 2 hour car ride to and from Shriner's. Of all times for this to happen. So pray for the munchkin that she stays healthy.

I am really looking forward to Monday, I just want to get this started and I need to feel like we are doing something for her. I feel like each day that passes her little spine could be getting worse. It is a terrible feeling to think you aren't helping your child. Waiting is always the worst part. Especially when it comes to the girls. Ah, well, we are almost there.

On a side note, you should see my house...what a mess. For the last 3 weeks, all we have done is play with the girls or research online. Now with Mackenzie being sick...what a mess. I have a huge pile of puked on laundry and not a clean dish in the house. The carpets need cleaned now (thank you Mackenzie:) and I haven't cooked in a week. So hopefully, this time next week we will be back to normal and have a solid plan for Delaney.

Since this blog is Delaney's journey, I'd like to share her good times as well as her bad. In the last 3 weeks, she has started crawling really well, she can pull herself up to stand, and she is clapping her hands while singing and dancing. Here is a video of her standing and dancing and just being her wonderful self.

I will post more on Tuesday about Shriner's. Thanks to everyone who has called, emailed, offered help or thoughts and prayers. It means the world to us to know so many wonderful supportive people. We are truly blessed. Keep the prayers coming.

Bracing??..Really??

2009-01-30T15:16:00.007-05:00

With each step forward we take the more sure we are of our decision to cast. Today was our appointment with Yanke Bionics, a company that makes prosthetics and orthotics. And while they do wonderful prosthetics for people who have lost limbs...doing a back brace for a child with scoliosis is, in my opinion, a big waste of time. We left there thinking, how in the world is that supposed to help. I have read so many stories over this last week of families who didn't know about casting and only did the back brace, and so far, I haven't found one family that the brace has completely stopped the progression of scoliosis. Who's children grew up straight and tall without the help of a dangerous surgery, a surgery that often times, doesn't even work.

So onto how the process of getting fitted for a brace worked. I wasn't sure what to expect but this wasn't it. I took pictures to document and to help everyone understand the processes we will be going through. When we got there, we stripped her down to her diaper and they measured her. Just around her body at different levels; collar bone, chest, belly, ect..Then they put this cheese cloth like body suit on her. Now, I have never had a broken bone so I am not familiar with how they cast you, but Michael said it was a lot like having an arm or foot cast. They soaked long strips of clothe in plaster and spread it out on the table, then we laid her down on top of that and they laid more strips of plaster all over her. Let me tell ya, she was NOT happy. It was cold and I am sure scary having 3 strange men hold you down. Then they just held the plaster in close to her body until it dried, which took 3 or 4 minutes. Minutes of ear piercing screams and huge crocodile tears. Nothing would console her. She was mad. After it dried, they cut it off of her so they could send the hardened cast and x-rays out to have the brace made. Delaney was covered in plaster, so we had to wash her down before we could dress her to go home. She was worn out and fell asleep immediately..poor girl. So now that part is done, we just wait for the brace which takes about 1 to 2 weeks. Hopefully we just paid for a brace that she won't ever even wear. Hopefully she will be cast before that silly brace even comes in.

The part that gets me is they say the brace is to help her sit straight and keep the spine from curving anymore than it already has. But I have read story after story that totally contradicts that. So many children it didn't help. I understand that this is so rare that doctors only know to follow a procedure that is standard, but come on...we found this better alternative treatment with a few clicks of the mouse. Why are doctors to proud to say, let's look into newer better treatments. Let's see if there is anything exciting happening in this area, before they dismiss you with little hope of your child recovering unscathed. How many children have to go through their lives with pain, physical scars, emotional scars, embarrassment, and years of treatments that don't fix the problem. It makes me so sad to think of all those children. The forgotten children. All children with rare and debilitating diseases. We have to do better for them.

Importance of the Little Things

2009-01-29T09:18:00.005-05:00

It's funny the things you think about. It may sound silly but I keep thinking about how I won't get to hug her squishy little body for almost 2 years without a big hard cast on. Don't get me wrong I am VERY grateful to have this casting opportunity to cure her. But there is nothing like holding your babies warm little body. I keep thinking how sad it is that she won't get to enjoy bath time the way little ones do. Or that this summer, she won't get to play in the pool with her big sister. I'm sure we will be keeping her indoors a lot because the cast will be so hot. Not a lot of outdoor time this year. And then there's what it will do to her skin. I hear it can rub places on her little body raw. And to anyone who has had a cast..well the itching. I just feel bad, and although she won't remember this time, it still breaks my heart. But it's for the best and we will get through it.

I've been keeping the heat in our house up and letting her be in just a diaper a lot. She LOVES to be naked (as most babies do). When she is cranky, just take her clothes off and it's like a different baby. I have also been videoing and taking lots of pictures of her like that. Mostly because she has so much fun, especially bath time with Mackenzie. She just splashes and shrieks and is sooo funny!

Just to give you an idea of just how normal her back looks here is a picture. If you look closely you can just barely see how her left side ribs stick out a bit more than the right. I'm sure this sounds ridiculous, but I keep looking at Mackenzie's spine. Running my hands down it to make sure it is growing straight. (It is, by the way:)

Well, I will write more tomorrow as she is getting fitted for her brace. I can't imagine making a mold of a squirmy babies torso. It should be an experience.

A Day at Cleveland Clinic

2009-01-27T18:52:00.005-05:00

As I sit here writing this Delaney is sitting on the floor with only a diaper on. She is talking, talking, talking and there's drool all over her. You would never know this was happening to her. She is always so happy. Unless you know what you are looking for, you would never even know what is going on inside her little body. It was only the fact that we are with her all the time that we just happened to find this..this rare, horrible problem.

On that note, apparently, our first ortho opinion was a little off...okay a lot off. Today we saw a specialist at the Cleveland Clinic. He confirmed that Delaney Cobb angle (the actual curve of the spine) is 40 degrees. But here's the bad part. There is something called a RVAD (rib vertebral angle difference) which is the angle of the rib to the vertebrae. The first doctor (we'll call him Dr. F) said Delaney's was 0. That it looked fine. Fast forward to Dr. K at the Clinic, who measured it at 50 DEGREES!!! Keep in mind anything above 20 degrees is part of the whole progressive diagnoses. So it is a bit worse than we thought. Also, something I thought was odd...the first ortho didn't even touch Delaney, just kind of glanced at her and then looked at the x-ray. Dr. K at CC moved her all around and felt her spine.

Two good things about the appointment was Dr. K was very open to the casting treatment. He highly recommended that if bracing doesn't work in a few months to move on to casting. (however, as I said, we aren't "waiting to see") And 2nd the doctors don't think an MRI is needed because she seems healthy otherwise. (Sometimes they do an MRI to determine if the scoliosis is part of a bigger problem; i.e. cerebral palsy, spina bifida ect..) So THANK GOD this is not part of an even bigger problem. So we are off to Shriners. Can't wait to get this moving.

OHHH...and Miss Delaney pulled herself up to standing today!! It is so funny to see such a tiny little body crawling and standing up:) She is 9 months old now and only weighs 13 lbs..but she is healthy and happy and eats well, we just have really tiny girls.

Michael & I aren't sleeping well, as I am sure you all can imagine. He has stressful dreams and tosses and turns all night while I wake up and start thinking about all of this, and the next thing I know it's dawn. Hopefully after we see some improvement we will be able to relax again. Well, off to feed our happy, naked girl. Thanks again to all the wonderful emails. It really means so much:)

Shriners Hospital

2009-01-26T12:57:00.004-05:00

Finally some good news! Michael called Shriners this morning to see if they would accept Delaney. the lady said they weren't accepting anyone until April. Michael explained Delaney's progression and curve degree and she got us in for FEBRUARY 9TH!!!!! WOW!! It seems like things are coming together to help her. Your prayers are working!! We are still going to the Cleveland Clinic tomorrow and to get her fitted for a brace on Friday. But hopefully Shriners and this casting is the answer to our prayers. I'm still trying to figure out this whole blogging thing but I will include some links to the casting procedure and a great article on it. If ya'll want to see what all it involves.

http://www.metacafe.com/watch/945693/mehta_casting/

http://www.urmc.rochester.edu/pr/news/story.cfm?id=1619

Keep praying!! More tomorrow after Cleveland Clinic.
Melody

Delaney's Diagnoses

2009-01-25T09:59:00.000-05:00

Last Friday, our lives as we knew it..changed. Our little girl was diagnosed with Progressive Infantile Scoliosis (PIS). What a long and dark weekend of research, worry, sadness, defeat and finally hope. After spending an hour writing email after email to update friends and family and then thanking everyone for their prayers, I realized a blog might be a good thing...for 3 reasons. 1. To let everyone know what is going on with Delaney. 2. To document Delaney's journey. 3. Frankly, to have an outlet for our feelings.

So onto Delaney's Story... About a month ago, as she was learning to sit by herself, I thought her back looked funny. One side seemed to stick out farther than the other. Michael and I chalked it up to more muscle on that side from pushing up to sitting. Last Tue night we were giving her a bath and it seemed to be getting worse. So Wed morning I made an appt with her pediatrician. Her doctor said there was definitely something there..maybe even scoliosis. WHOA!! So she referred us to an orthopedic surgeon. Friday we had x-rays and the ortho confirmed the diagnoses. Her spine is curving 40 degrees. I have attached a picture of the x-ray to give you an idea of what it looks like. He recommended a brace to stop the progression and we'd check in 4-6 months. He said, there is no cure. Those are very profound words...no cure.

Well, in our minds, that was unacceptable. This doctor only saw 1 case every few years. While I am sure he is a good ortho, his lack of knowledge on this disease was disturbing. He wanted to just "wait and see" Well if any of you know Michael and I, you know that's not us when it comes to the girls.

So home we went with little knowledge and little hope. Immediately, we took to the internet...looking for anything and everything. We wanted ALL the information. We also made an appt with Cleveland Clinic orthopedics for next tue for a second opinion. But on Friday night we went to bed with little hope. PIS is so rare (1 in 10,000 cases in children) there's not a lot of info. And what we did find was basically what the ortho said...Brace her until she is old enough for a very scary surgery. And even that might not help. Our baby could be deformed or worse..it could crush her organs. Needless to say, we were scared!

Saturday morning, as the girls watched T.V., I was scouring the web and came across a website I had found after the word scoliosis came up at the peds... www.infantilescoliosis.org. It talked about a procedure called "casting" that could CURE scoliosis. I ran upstairs to tell Michael and we began researching. Only a handful of doctors in the U.S. do it. They have been trained by the lady who discovered it herself. In the procedure they put the child under and straighten the spine, then put a plaster cast around their torso.This will "train" the spine to grow straight during this rapid period of growth. They change the cast every 2 months or so until the spine is straight (approx 2 years of casting) It works best before the age of 2. We have found sooo many people that this has helped...and no one that had tried it that it didn't. FINALLY...HOPE!!!!

And as luck would have it, one of the doctors is in Erie, PA at Shriners Hospital. 2 hours from us!! And on top of that, Shriners is a FREE hospital dedicated in helping children in Orthopedics and Burns. But you have to be accepted...and so we wait until Monday....