Friday, May 18, 2012
Kicked back, reading a book....(pic texted from daycare teacher).
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Ella is piling stuffed animals, blankets, pillows, etc., all into Lucy's crib. Then, she wants me to "hide" Lucy in the crib, and see if she can find her. Like searching for buried treasure.
I let it get this far...no blankets. I think Ella was pretty disappointed that Lucy was so easy to find.
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| From Lucy 7 to 8months |
Sunday, May 20, 2012
One of Ella's friends from school, Wyatt, had an awesome firefighter birthday party!
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Monday, May 21, 2012
Today, Jason and I celebrated our 7th anniversary! The past couple of years we have tried to get away for a couple of days, but it didn't seem like the right time to do that this year.
I did some yard work, which was actually really nice (for me....Jason's not a fan). It doesn't sound like a little luxury but I don't often get the chance to be away from the kids. Since I have a full time job, the time I have with them is brief, only an hour or two each night, amidst dinner, baths and bedtime routines. I want to spend as much time with them as I can when I can. So, lots of things get neglected.... like the yard. I cringe every time we pull out of the driveway. I'm staring down the weeds, silently pleading with them not to grow. "I don't have time to deal with you!" It's therapeutic to be able to rip them out of the ground!
Later, Jason and I had dinner at Village Tavern and then saw the Avengers. It was a great night, with great food, a great movie, and great company! We had a wonderful time. I love my family and I am so thankful for all of the beautiful gifts the Lord has blessed us with!
Wednesday, May 23, 2012
I had been thinking for a while about the x-ray of Lucy's ribs that we had taken at the endocrinologist's office. I know he said she was fine, but I just kept having this nagging feeling that he was missing something. I decided to email the images to our Dr.'s in Delaware. They emailed me back and said that the image from the email was not very clear and could I please send them the images on a disk. I put the x-rays on a disk and over-nighted them immediately. I knew they would call me in a couple of days when they had a chance to look it over.
Friday, May 25, 2012
Lucy's daycare called me a little after lunch. They said that she had been moaning and crying out in her sleep during her first nap. Then, after nap time, she had been fussy, and not wanting to eat. They asked me to come to the school to see if I thought she was OK. It has been such a huge blessing for us to have the daycare directly across the street from our office. I can just zip across the street in less than a minute. I had become accustomed to her not being hurt. The last break that we know she had was at 2 weeks old. I thought to myself all the time: maybe they got it wrong, maybe the Lord healed her, maybe she is just really mild, maybe she's not going to break. They weren't even 100% sure that she had OI. The last thing I was told was that we are believing that she has OI until she shows us otherwise. Everything we believed was based on a clinical evidence (the way her bones looked on x-ray). There was no genetic test to back up the diagnosis of type OI type V.
When I got to the school, her teacher was holding her against her chest. She looked like she was asleep, but she was sweating really bad. I took her and held her. Her face was red and she fussed a little bit. I put her in her car seat and just looked at her.
(I'm constantly paranoid about breaks, I think her arms hurt all the time, I think she is holding something funny or moving differently and I instantly think "SHE HAS A BREAK". Most of our Dr.s just look at me like I'm crazy (while we watch her play happily, all the while using whatever arm, leg, foot, etc. I was just sure was injured.) I know now...that it was very possible that I was right. She could have had micro fractures or bone pain in those areas. She heals really fast. I have learned...if she acts like she has a fracture, she probably does. She is just so pain tolerant, it doesn't manifest itself the way it would in a typical child. This is her life. On a scale of 1 to 10, your 10 may be her 5. I have learned that as her mother - I know her best. I have learned that her disease is not well understood and there are very few Dr.'s in the world that even have a clue about how a child with OI breaks. Even those Dr.'s don't have OI or have a child with OI, so I have a hard time even thinking that they even truly "get it".)
SEE! This is why I hate being behind on my posting....I didn't know all this then...we were still so busy running from Dr. to Dr. I was still learning just the basics of how to care for her.
I was trying to calmly analyze the situation. I looked her up and down and gently squeezed her arms and legs to see if I could get a reaction. I wasn't sure, but I thought that she must be having pain in her left leg. I brought her back to my office and let Jason look at her. She was sitting kind of funny, she was twisted a little to one side and she had pulled her left leg up a little. I decided that I would take her to the ER.
I called Delaware and spoke to Angie, a genetic counselor who I talk to so much, I consider her a friend. She probably considers me a stalker. Anyway, I described to Angie what was going on and I told her that we were taking Lucy to the ER and I asked her what I needed to do or tell the ER Dr.s there. There is a very real fear that since Lucy doesn't have a genetic diagnosis, Child protective services could be called because they would assume that we had abused her. She told us to make sure that we stayed with her at all times and we were the only ones to handle her and if she did have a break to have the ER physician page Dr. Bober, our geneticist, and he would explain her diagnosis to them.
On our way to the hospital, Lucy's pain seemed to be increasing by the second. The roads down I-65 are not the best, and with every bump, she cried out in pain. By the time we arrived at the ER, she was red in the face, she wouldn't open her eyes, and she was moaning non-stop. When we signed in I told the nurse at the desk that my child had brittle bone disease and I believed that she had broken a bone in her leg. They immediately took us into triage. They wanted to do vitals, but I wouldn't let them get a weight or blood pressure. Her O2 was good, but her heart rate was 205! She was clearly in pain. The nurse said that she thought it was her femur. The femur is the strongest bone in your body. Most people would only break a femur if they were in a serious car accident. Nothing had happened to Lucy today, according to the daycare.
We were put in a room to wait. I was told that she could have nothing to eat, just in case she had to have surgery. They said that they would send someone around from x-ray. I asked for pain medication.
We waited...and waited. I tried distracting her, kissing on her (she didn't want to be touched), singing to her, nothing helped. The x-ray tech came by to get her for x-ray. I told them we were not moving her until she got something for pain.
I noticed that Lucy was smelling kind of bad. She had a dirty diaper...not just any dirty diaper, it was completely up her back. There was nothing I could do. I wasn't about to move her until she got pain medication. I went back out to the nurses station to see if I could get someone to take an interest in her pain.
Finally a Dr. came in....a resident. He asked a few questions and he started looking a Lucy. He ran his finger down the bottom of her foot to "check and see if anything else could be wrong with her leg besides the femur". Of course, Lucy jerked her leg back and then screamed in pain. I was LIVID! I told him to leave and not come back until he had something for pain. He was not welcome to touch my daughter again, and he needed to be accompanied by an attending if he came back through that door, preferably an orthopedist. (My blood pressure is up just reliving it.)
Finally, an attending physician came in and gave her Fentanyl. Fentanyl is in a class of medications called narcotic (opiate) analgesics. It works by changing the way the brain and nervous system respond to pain. I don't know if it was the right thing to give her or not. I had been expecting morphine, but at that moment I just trusted him. He gave it to her up her nose. After about 15 minutes her breathing had slowed down and the x-ray technician came back. I still had not removed Lucy from her car seat.
I carried the seat into x-ray. I laid down her changing pad and as gently as I could I lifted her from the seat. Thank goodness it was a sweet lady technician, she helped to undress and wipe Lucy down while I held her as still as possible in my arms. Then we slowly laid her down on the table. There was no way around it...I know it hurt her. They had to take a few pictures. I was the only one that touched her though.
As soon as they finished. I picked her up and held her. She was completely worn out and immediately fell asleep. I was so relieved that she was able to rest comfortably, and I was able to hold her.
An orthopedist I didn't recognize came in to talk to me. Lucy did have a fracture. Not only did she have a fracture in her left leg, that went all the way through the bone, but was not displaced, she also had two other healing fractures, one above the new one in her left femur and one in her right femur.
We talked about immobilization options, he was aware that children with OI should be immobilized for as short a time as possible to limit osteoporosis and muscle atrophy. He spoke to the attending Ortho and they decided on a back slab cast. I found out later that this Dr. was a resident! He was kind, patient, informed.....He's going to be great one day! My only complaint: he couldn't get in touch with our Geneticist in Delaware. He said the number was disconnected. After he left, I used my cell phone and paged Dr. Bober myself. It worked fine. He called me right back...its around 9pm on a Friday night at this point. We spoke on the phone for nearly an hour. He told me that he had received the images I sent him of Lucy's ribs and spine and said that he saw 2 compression fractures on the x-rays!!! I knew there was something wrong! He said that Lucy was declaring herself: "I have Osteogenesis Imperfecta". He said that he knew right away before I called that Lucy was going to have a femur fracture, he said that she now qualified for Bisphosphate treatment, IE. Pamidronate aka PAM, and would need to start treatment within the month.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
I spent the next three days on the phone begging for pain medicine and trying to learn how to move her without her being in excruciating pain. Finally, a ortho-resident on call, had mercy on us and called us in some Lortab.
I have always been told by other OI moms, that OI should not stop life, especially the fun times. So...off we go.
Saturday, May 26, 2012
One day Lucy is going to kill me for these videos...
Swimming at Meemaw's
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
It's so great to see that sweet smile again.
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| From Lucy 7 to 8months |
Sunday, May 27, 2012
Jason took Ella to the McWane Center. Lucy and I decided to sit this one out.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Back at home....
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| From Lucy 7 to 8months |
Monday, May 28, 2012
Memorial Day - we had plans to visit Poppy and CiCi today, but we were having trouble finding good seating options for Lulu. I talked to another OI mom and she suggested we try to find a bean bag. It sounded like a great idea...and very portable. I had no idea how difficult it would be to find a good quality bean bag.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Wednesday, May 30th, 2012
Since, Lulu was mostly just chillin' these days, we decided to try a new skill. The sippy cup was a great idea, but ended up being most used as a teether. Oh well....you gotta start somewhere.
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| From Lucy 7 to 8months |
Thursday, May 31st, 2012
We had a follow-up appointment with Lucy's Orthopedist to evaluate if she was starting to heal and if it was healing straight..etc. Dr. Conklin pointed out that the back slab that the ER had put on Lucy, ENDED in the middle of her fracture. No wonder she had been in so much pain. He made her another back slab that went about half-way up her back.
We got home and Lucy was clearly hurting....she was not due for more pain medicine. I didn't know what to do, but she was screaming like she had a new fracture. I called another mom for advice and we started talking it out. I squeezed her from top to bottom, but I couldn't tell if any one place hurt more than the next. Finally, I decided to unwrap her splint and just let her sit for a minute. As soon as I unwrapped it, she immediately stopped crying and literally laughed at me. The new cast didn't end in the middle of her femur fracture, it ended in the middle of her compression fracture! Gahh!
Splinting 101.... I need you!!!! I put the old one back on her - she was used to it by then. It is so frustrating to see your baby hurting and not know what to do about it. I cant wait until the day that she can communicate with me!
We went to the mall to get out of the house.
This is what we get these days if we ask Ella to smile for a picture.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Friday, June 1, 2012
Lucy cut her 1st tooth!! (Bottom L middle) Poor baby, she has just not been feeling to good.
Wednesday June 6, 2012
In the past week, I have been working on getting Pamidronate treatments started with our Endocrinologist. Suddenly, what seemed silly (getting in with a Dr. you didn't need), wasn't silly at all. The process of setting up her treatment was no simple process either. Children's hospital of Birmingham follows their own protocol, not the one recommended by our geneticist in Delaware. I decided to bypass the middle man and go straight to the physician who created the protocol and discovered Lucy's type, Dr. Glorieux, in Montreal. I sent him an email requesting a copy of his protocol to pass on to my endocrinologist. About 15minutes after I pressed "Send", he called me!!!
He wanted to discuss Lucy and make sure his protocol was appropriate for her. After we began talking, he remembered her case and discussing her with Dr. Bober. He was in agreement to send me his protocol!!! I immediately forwarded it to our Endocrinologist, who graciously agreed to follow it. WOW! Praise the Lord for doctors who care!!!
Thursday, June 7, 2012
Look at me....I'm free!!! She was out of her cast in about 10 days! Whoa, that's fast!
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Ella has been enjoying her 1st vacation bible school this week and spending lots of time with one of her favorite peeps!
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Friday, June 8, 2012
My friend Stephanie and I took Ella and her son, Ethan, to the ice skating rink. I was very aware while we were there that Lucy will probably never ice skate. I was actually feeling like a borderline irresponsible parent with Ella out there. She and I barely escaped, with only a few bruises to show for it. Not a fan of the ice, personally.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Monday, June 11, 2012
I believe there is a little bean bag envy goin' on.
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| From Lucy 7 to 8months |
Tuesday, June 12th, 2012
Lucy cut her 2nd tooth! (Bottom R middle)
Thursday, June 14th, 2012
Friday, June 15th, 2012
Daddy took Ella to Toys R' Us to buy her cousin Emma a birthday present. He texted me these pictures. Its always an adventure...
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
I think Ella took this one...
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| From Lucy 7 to 8months |
Lookin' cute...feelin' good!
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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From Lucy 7 to 8months
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Technically, Ella is not naked in these pictures.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Saturday, June 16th, 2012
We drove up to Huntsville for our sweet niece, Emma's, 4th birthday party!!
CiCi getting a chance to love on Lulu.
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| From Lucy 7 to 8months |
I am blessed!
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| From Lucy 7 to 8months |
Poppy and CiCi with all the grands
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Nonnie
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
No Fear...nose to nose :)
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| From Lucy 7 to 8months |
Daddy and "Itty Bitty"
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Sunday, June 17th, 2012 -
Father's Day and Lucy is 8 Months Old!! There should be a picture here of daddy getting his breakfast in bed and the delivery of his hand painted coffee mug, with Ella's family portrait on one side, and Lucy's feet printed in the shape of a heart on the other side, but I kinda dropped the ball on the pictures....sorry daddy.
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
Just a swangin'
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| From Lucy 7 to 8months |
Its good to be a baby...
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| From Lucy 7 to 8months |
"Big Bitty"
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
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| From Lucy 7 to 8months |
8 Months Old!!!
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| From Lucy 7 to 8months |
Milestones:
- 3 femur fractures and 2 compression fractures. Not exactly milestones, but certainly memorable.
- She talks all the time now. I swear she can say, “Hey Ella”, and “Hey Dada” J
- Daddy calls her “itty bitty” and Ella "big bitty", I call her "jabber-wocky", but my pet name hasn't really stuck, maybe cause daddy talks so much....lol.
- She got promoted at daycare to infant 2 and has one-on-one care (Mrs. Tindall).
- Bought her a bean bag that she loves!
- Ella’s first year to go to VBS!
- Went back to prilosec, found a banana flavor.
- She holds her arms up for us to get her. (love that!)
- Cut her first tooth 6/1/12 bottom R. Around the 12th of the month she cut her second tooth..center bottom L.
- Is eating puffs and yogurt melts! Working on perfecting her pincer grasp!
- We started at therapy at the Lakeshore Foundation. Loves water therapy!!
- We finally moved Lucy from her bassinet to her crib. June 8th – started sleeping in her crib!
- Continuing to scoot backwards, but now trying to pull her knees under her.
- Drags objects to herself.
- Passes objects from one hand to the other.
