- So I am making a new blog because my old one was messed up and I could see my blog but couldnt log into my blog to add to it. As you can see the last time I logged in was October. It is now May 22, 2013 and I have ALOT of catching up to do.
- 17
Here is our adorable family photo when we went to the Pumpkin Patch!
Addy hadnt had her nap yet but we did get some good smiles from her!
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I feel like I am constantly worrying about the unknown future of my baby girl. She will have braces put on Nov 6 so we are 3 weeks away from that! I cant wait. They are called hinged hip abduction braces with adjustable extension blocks. Don’t really know much more about them than that. But her dr office has been really helpful and supportive of all my wild crazy fears. Then, sometime next summer, Addy will have another surgery with a new spica cast put on and that makes me want to SCREAM! I dont want her going back into this damn thing. It literally makes me sick at my stomach. Im supposed to be protecting my daughter…well I guess that ship has sailed, huh? I should have done more to get her x-rayed quicker but everything I tried didnt work…ugh. Anyway enough of my ranting about worries.
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So after 6 weeks of being in that cast, it was starting to stink! If she actually LIKED bath time, I would bath her everyday but since she screams throughout the whole thing, we bathe her every other day. Her choice! I don’t want to put her through any more than necessary!
Anyway, Addy’s second surgery/cast change happened exactly six weeks to the day after her first surgery, which fell on September 25th, 2012. Not as many people came for that one, but still a good amount. She was much calmer this time around and the Versad actually worked this time! Before, it just made her drunk but she still screamed when I had to hand her over the OR nurse. Luckily my husband works at this particular hospital and happened to know her so I felt better about it but it was still hard. Anyway, we had the same OR nurse this time so that was GREAT! And Addy was SO drunk that she didn’t even care when I handed her over. While we waited, Daddy blew up a latex glove and we played with it like a balloon. And we facetimed Nanny and Aunt Mar-Mar, which helped!
Good riddance pink and zebra duct tape cast!! Blake wanted to keep the cast! Can you imagine the stench!?! Eww!!
The surgery went great and Addy woke up ALOT better than she did the first time around. She woke up and immediately started trying to get her IV out! I told the nurse if she didn’t take it out, then Addy was going to. I felt much more comfortable this time around and just picked her up out of the bed and rocked her. She was instantly fine. The nurse commended me on how good of a job I was doing (she was our PACU nurse the 1st time too and remembered us). It was nice to hear that because I really have been trying so hard. And I’ve basically been doing it alone. Blake works every Saturday and goes to school Mon-Fri so really hes only home on Sunday and thats when hes either studying or doing homework, or both! So anyway, we took her right home and she fell asleep like this.
We opted for purple this time. I found a really pretty blue and white flower duct tape that I decorated it with! So pretty!
She can also climb into a standing position from her tummy to the side of the couch! I couldn’t believe it! Dont mind the crazy hair!
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So after the first few weeks, Addy started to accept that she was now immobile and was stuck in this cast for an undetermined amount of time. She definitely regressed during this time. She wanted her pacifier all the time, which I gave to her, and she went from about 80 words to maybe 50…But those were things I had expected. Since she wasn’t walking at her second birthday, I hadn’t even begun potty training. Well I had the toddler potty next to “mommys potty” in the bathroom and I took her in there with me whenever I went and she watched me flush the toilet and wash my hands so she kind of got the idea. Then, with this cast we decided not to push the issue because there really was no point.
Before we could even take her home from the hospital, we had to have a carseat. We knew there was one type of car seat for a spica cast and it was called a Britax Hippo Car Seat. We also knew they were $500 brand new and after weeks of fighting with our insurance, they wouldn’t cover it (which was BS, if you ask me! How else were we supposed to get her home!?)
Luckily we found one the SUNDAY BEFORE HER SURGERY, on craiglist, barely used, as most of these are, for $100! We were incredibly lucky! It also gave us a chance to talk with another Mom who had gone through what we were. Here is a better picture of Addy (sans drugged up) in her car seat.
We knew we would need some sort of bean bag for her so we went shopping and found this oversized cordoroy navy blue bean bag from target for $30. I thought that was a little pricey but OMG it has been a lifesaver!! Its her favorite place to be and its where she sleeps, too.
This is Addy with her Aunt Hannah chillin in the bean bag. She loves her Aunt Hannah to pieces. I kinda do, too
Then, my dad actually found this radio flyer saucer at walmart for like $15 and she fits perfectly on top of it! It has wheels so i can push her and spin her around and she really likes it. I don’t have an actual picture of her in it but I will get one. But this is what it looks like.
Its pretty awesome! I MAY or may not have tried it out.
Then, we knew we had to have a stroller (she refused to sit in a shopping cart) so we went looking at Toys R Us and actually found one that she would fit it! It happened to be the same brand as the special car seat, Britax. It was $200 (Thanks Dad!!) but it was worth every penny! As you can see in the picture, she loved it!
I had read online about people making special table and chairs for spica casts but its SO expensive and I’m sure takes a while to have made specially for your child and by the time you get it, you may only have a week or two to actually use it so I put everyone on alert for a desk that might work. My aunt Marcia was the one who found it! She got it from Sams Club for $30 and it works great! This was the first time Addy had a sense of independence since being casted. Here is a generic picture of it that I found online.
Its like a school desk in that the table part is attached to the chair which was important. She loves the cup holder and I love the storage space/bin at the bottom! Here is Addy sitting in it! Sometimes she likes the pillow behind her and sometimes she doesnt.
and another
About four weeks into the first cast, she learned to crawl. First it was an army crawl, then she gained enough strength in her arms to actually hold herself up and crawl with her arms all the way extended. Then, about 5 1/2 weeks into the first cast, she learned to roll over from her stomach to her back. But she can’t roll back over. I think the bar gets in the way. All in all, she has been a trooper! She really is my hero.
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So we got in to see the orthopedic surgeon less than a week after the x-rays were taken. He was a man of few words, we were warned, but I really liked him and his staff. He got right to the point but gave us a few seconds of silence to let his words sink in. He gave Addy a sucker, but she was still terrified of him. She is terrified of all new places and anyone in scrubs. But I can’t say that I blame her…
So he basically laid it all out for us. He said this is the most difficult surgery a pediatric orthopedic surgeon will ever do. He’s been practicing medicine for 25 years and only done maybe a dozen of them, one every 3 years or so. It had been that long since he had done one. He wasn’t inexperienced, its just that these are very rare. He said he would have to cut an inch out of her femur (called femoral shortening) so that he could move the femur down into its place. Then, he said he would use that bone to make a new hip socket for Addy because hers never developed correctly. He said her socket was like a saucer and it needed to be more like a teacup so her ball joint wouldnt slip in and out of socket. He did see that her ligaments were very lax, meaning she could stretch very easily. He said your ligaments are supposed to be like leather straps but hers were more like rubber bands. (I LOVED THAT HE USED THESE ANALOGIES! It really helped me) So he said since she was so lax that there was a chance that she wouldn’t need the femural shortening. At this point, surgery was surgery no matter what they did. I didn’t let myself understand the severity of it because I would have totally lost it.
He ordered blood work, told us it would be a month before we could do the surgery because he had to have the hospital buy the equipment that would be needed. That month I tried to do all kinds of fun stuff with her-take her swimming (her favorite thing!) and take her for walks and just let her be a toddler because I knew she wouldn’t get to be one for a long time…However, I didn’t quite grasp just how long that would be…
Addyson had her first surgery at 7 am on August 14th, 2012. My best friend, Kris, stayed the night with me the night before and was with me the whole way through. I don’t know what I would have done without her. My dad and aunt also came in for the surgery. Addy had a huge support system. My father in law made us shirts that turned out AWESOME!!
So we were told the surgery would take at least 3 hours so we all set up shop in the waiting area. It was me, Blake, my mom and dad, my aunt, my best friend, Kris, my mother and father in law, my sister in law, and my brother in law. About an hour into the surgery, to my surprise, the surgeon comes out!! Blake and a few others had gone to the cafeteria so they weren’t there! I was so scared! I didn’t know why he was out so soon. He said it was good news and not to worry. He found out he wouldnt have to cut her bone after all! He was able to pop the hip into place without opening her up! And we could go home that day! I was amazed! She woke up from the anethsia crying and confused and of course, in a spica cast. Here is what she looked like on the drive home.
She was still a little drugged up.
But later that day, she looked like this with her Uncle Bubby!
The first few days were the hardest. She screamed and wanted out of the cast. I felt so helpless so I just sat there and cried with her. I really had alot of guilt. I felt like it was my fault somehow. I really struggled with it, and still do.
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So I wanted to write something to help other moms going through what I am going through. I found one mom who has helped me tremendously and I’d like to pay it forward. My daughter was born 5 weeks premature and was in the NICU for 14 days. She weighed 4 lbs 15 oz at birth. At 4 months old she was diagnosed with Congential Hypothyroidism and we were told she would have to take medication for the rest of her life. Basically, her thyroid isnt working properly so she takes a pill every day to help stimulate it to work. Then, we started noticing that she wasnt hitting the “normal” physical milestones. She was about 4 months behind. She rolled over at 8 months and crawled at 12 months. Her crawl was not the normal crawling on her two arms and knees. Her left leg drug behind and she used her arms and right leg to crawl. I had never seen anything like that before. At 2 years old, she still wasn’t 100% walking. I had been asking/demanding her pediatrician to do x-rays on her legs to make sure there was nothing wrong with her bones. I don’t have any medical degree by any means but it was more of a mothers instinct. He said it was NOT her bones, but maybe it was something neurological. So we put in a referral to a neurologist. A few months passed, waiting on the referral to go through, and then she started taking a step or two sporadically. This started the February before she turned two (in July). Every two weeks, like clockwork, she would take one to two steps and then that was it. When I would try to hold her hands and have her walk in front of me, she would do it for about 15 steps and then start crying and want to crawl. It is also important that I add that she NEVER would jump in her bouncer or on the bed or even jump off the floor with us holding her. She just couldnt do it. I thought that was odd. From about January until July of 2012 she was seeing an occupational therapist twice a month and a physical therapist twice a month. They both said she would walk when she wanted to but did notice her left leg was considerable weaker than her right. But didnt really say anything about it.
Then, at her two year well baby check up, while the pediatrician was examining her hips (for the millionth time!) he finally heard a “pop” on her left side (remember the left leg was the one that would drag when she crawled). So he said “Okay maybe we should do x-rays). I was both scared but also excited because I thought maybe we would FINALLY have an answer. The very next day, I took her first thing to get x-rays done. I was by myself because my husband was at work. When the first x-ray popped up I immediately said “That cant be right, we need to re-do it!” and the tech agreed. So we re-did it and it looked basically the same. She finished with the x-rays with her legs straight out iin front of her and then frog legged. She gave me actual copies of them. I KNEW something was wrong. I went straight to my mother in laws work and had her come out to the car to take a look. She said that didnt look right either. I started crying and freaking out. I was so scared! I had no idea what it meant but I knew it wasn’t right. I had been correct all along and her bones were messed up. My mother in law mentioned the words Hip Dysplasia which I knew meant the hip was out of socket but I didnt know anything else about it. I sat there in the parking lot and googled it. I looked at x-rays of other children and knew that this was what was wrong with my baby girl. I went from being scared and upset to FURIOUS! I took Addy to my father in laws house and went straight to the pediatricians office. I marched in, said no I didnt have an appt but the dr needed to see these x-rays RIGHT AWAY. Sadly enough, my daughter is at the dr office so much that they all know us by name. So, she said “I’ll go give them to him.” I was put in a room almost right away and the dr came in with this look on his face. He confirmed that it was hip dysplasia and he would get me in with an orthopedic surgeon right away. At that point, my worst fears were confirmed. She would need surgery. Here are her x-rays taken July 17, 2012.
Notice on her left side where the hip isnt even connected to the socket. The socket isn’t even fully formed.
Here is the x-ray of her frog legged. Even with her legs bent, the hip just goes up into…who knows where…
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