All Hallow's Eve 2009

Oh what a fun time of year!! I love Halloween and dressing up the kids. I miss dressing up myself...I haven't dressed up in 2 years now. This year was extra fun because Aidan got to be his favorite wrestler, Jeff Hardy, and Rhae was more active than last year so she really got into it!

the Jeff Hardy pose (wrestling fans understand!)

Another Hardy pose

Aidan? Is that you??

My little Snow White

I cuuuuuuute! (one of Rhae's favorite words!)

For anybody who's ever asked me who Rhae looks like...hear ya go!

Bo, Nana, Rhae, and Aidan

My 2 favorite girls!!

My wonderful MIL, Peggy, and Rhae

Granny and her babies!

I humbly accept this award as the World's Worst Blogger for 2009. While it has not been pleasant accepting this title, it is nice to know enough people keep up with us enough to bestow it upon me! However, I cannot take all the credit. My title would not have been possible without the following:

1. My OI family that we met up with in Gatlinburg in early July. We spent a long weekend in one HUGE house on top of a mountain. We had great fun meeting some for the first time and seeing some again. There were 9 families total there with children ranging from 3 months to 9 years old (I think Halle is 9). It was great to see older kids being wild and crazy and doing normal kid things, and it was great to see baby Ethan, who reminded us of how far Rhae has come. I didn't get on the internet too much while there, so blogging was impossible!

Rhae and Alexi (who Rhae ADORES!)

The OI babies!

(front: Merrick and dad, Sudda; Riley and mom, Cassie;

back: Autumn and dad, Russ; Ethan and mom, Debbie, me and Rhae)

Dana and Rhae at the Aquarium

Dana, Aidan, and Rhae

Aidan and Rhae

Aidan at The Track--first time riding a go-kart!

Sweet Riley! Seriously, she's adorable!

Rhae and Riley just chillin'

2. My mom, stepdad, sister, neice, Jay, and kids. Mandy and I, along with our stepdad, planned a surprise visit to Texas for my mom. We started planning in April, and didn't go until middle of July...and she never found out until we showed up! This was the girls' first trip to Texas and our first in 3 years! We had so much fun, visiting with mom, Rodney, and their neighbors, getting to see Mandy's best friend from Brazoria who we haven't seen in 12 years, going to Kemah and hanging out (a boardwalk), and just being together. We had so much fun and stayed so busy, there was no time for blogging!

Halle and Rhae taking one of MANY wagon rides up and down the driveway!

Jay and Rhae at Kemah

Aidan in the water at Kemah (it shoots up randomly out of the TX star)

3. Aidan again...can you believe he started FIRST GRADE this year? It's unbelieveable how much my baby is growing. He will be 7 in December and is already almost as tall as I am and can eat like Jay!! He brings such joy to my life. I have really watched him grow up over the last 2 years. I can only hope we are grooming a young man as responsible as he is kind. He has a heart of gold and LOVES his sister unconditionally. He is probably the one person in this world that I can say she is infatuated (sp) with! However, he is all boy, and is as hard headed as his momma is! First grade brings a lot of homework with it, so for this reason, I have not had a ton of time to blog!

Aidan's 1st day of 1st grade

4. My busy work. Where would I be without all my busy work? I'm still doing a little work for a doctor friend, and have started making bows. On occasion, I do find other things to do, like recovering a chair, covering things with vinyl cut-outs (let me know if you need anything!), going to Wal-Mart, trying to keep the house somewhat picked up. With all this busy work, who has time for blogging?

Bows...

Bows...

and more bow! These I made for Anna Coleman!

Initial clipboards

The chair I recovered. It's at Aidan's computer desk, and fits well with all his Alabama stuff, including his red walls!!

5. And last but not least, I have to give a lot of credit to Rhae. She keeps me busy 24-7. We play, we fuss, we fight over napping and going to bed at night. She learned to stand up...and then fell and broke another arm. Then she got the flu. But best of all, we have surgery! Rhae, Mom, and I went to Omaha on 9/30 to prepare for Rhae's leg rodding surgery. Jay came the next day. Rhae went in for surgery on 10/2 and had telescoping rods placed in her femurs (thigh bone) and tibias (big bone in the shin) on both legs! It was about a 6 hour surgery and she looks so good! Her legs are so straight, and she is now about 2 inches longer than before! We have had a rough time since surgery, most of it expected, and I believe she has finally turned a corner! I also have to give a little credit to some of our best friends, Christiane, Matt, and Trinity Stine (they also have a son, Tysen, but he didn't make the trip), who were in Omaha at the same time as we were! Trini broke her right femur 2 weeks before Rhae's surgery and had her rods put in the week before Rhae. They are so wonderful, they hung around to be there when Rhae had her surgery. Many of you know how much Christiane and I talk (several times a week for hours at a time, for those of you who don't know!) so it was REALLY nice to finally meet in person! We also had some other friends, the Wittman-Lammie's there as well (remember sweet Riley?)! So with all that distraction going on, who really has time for blogging?

Rhae beginning to stand

Rhae just being Rhae!

Rhae's new toy, courtesy of Ethan! She loved it so much, she broke her arm trying to play with it a few hours later! This was her first time seeing it, though! Can you see the excitement?

Rhae with the flu

Mom, Rhae, me, and Lance Winn, president of the Arkansas chapter of Pilots for Christ, and one of the sweetest men you'll ever meet!

Rhae, Dana, Trinity, and Christiane

Trinity

Rhae and Riley

How can I tell they're going to be BFFs? How many people would let you mess with their hair and never say a word?

Waking up from surgery

A priceless picture! Trini and Rhae both have "boo boo legs!"

Always be ready for game day, no matter how far away you are!

Cruisin' the ward in a wagon! (notice she's holding hands with her love, Elmo)

Me and Rhae

SO glad to be home!

Again, I am honored to have this title bestowed upon me, and though I appreciate it, I will try my hardest not to live up to it anymore! However, if I continue, please forgive me now and then...I'm only human!

Thank you....(wipes a tear, and exits the stage!)

P.S. I just HAD to include these pics! These are Rhae and Dash. His oldest sister, Ella, thinks they should get married when they grow up. They do make an adorable couple, so we took some embarrassing baby pics for the after rehearsal dinner...just incase! :)

Update

I'm sorry it has taken so long for me to update everyone on Rhae, but for those of you who have been to Omaha, I'm sure you know, things happen at a different pace out here! This is our 2nd time here, and things seem to move at break neck speed! Anyway, I'm sure most of you know by now, but for those of you who do not, we made it to Omaha and Rhae did NOT have to have surgery! We flew out Wednesday with a wonderful organization called Pilots for Christ (a whole OTHER post in itself for a longer night!). Mom met us here. On Thursday morning, we had to be at the hospital at 7:45 for xrays and an echocardiogram. The night Rhae was admitted to the hospital, the doctor in the ER made the comment her heart looked a little enlarged. Well, with everything else that had been going on, it didn't cross my mind again until several days later. When the nurse from Children's called for the pre-surgical screening, she asked about any heart problems and I mentioned the xray to her and the fact that Rhae has had a fast heart rate since birth which made me wonder if her heart looked large because of the smallness of her chest, or if it could indeed be enlarged. She talked with the anesthesiologist and they decided we would have an echo before surgery to make sure it wasn't a problem we didn't know about during surgery. We were also getting chest xrays to make sure her pneumonia had resolved, and looking at the arm one last time to get a good look and decide on hardware. Well, lo and behold, to our surprise, the same bone that didn't show healing on Monday now had a small callous formation, which you see when healing begins! So we were able to bypass surgery and have a custom brace applied to the arm! Praise God! He knew I wasn't ready to send my baby to surgery! I still worry about the bone being weak because this is the 3rd or 4th time it has broken in the same spot, but Dr. Esposito didn't say anything about it, only it would take at least 2 weeks for this to heal. I worry it may take a little longer, and worry about her muscle tone getting weaker than it was already with this arm being wrapped up for a total of 5 weeks IF it heals on time! Her chest xray still showed some reminants of pneumonia, so it is really good we didn't have to go through with the surgery, since her normal respiratory effort is already compromised and this would only have increased her risk during surgery. Her heart was ok. Her chest has a deep sunken area below the sternum, called pectus excavatum, which is so deep it is pushing her heart back and to the side, which makes it look enlarged. She also has a small valve prolapse at the top of her heart. However, the echo was read as normal. I'm still a little concerned over that, as I feel if it is a mitral valve prolapse, she is symptomatic with tachycardia, but if it is something else, I want to know what and should we be doing anything about it. Either way, I have access to a wonderful pediatric cardiologist in Birmingham and plan to make an appointment with him soon to follow-up. I feel at the least, we should be followed yearly with an echo and check-up. We are still in Omaha and will hopefully head home on Tuesday. I am waiting to hear from the nurse practitioner who works with the OI clinic here to see if we can go ahead and get Rhae's PAM treatment tomorrow while we are here since she is due for it on Thursday anyway and would mean us getting home Tuesday or Wednesday, then having to turn around and be in Birmingham (2 hours from home) on Thursday. Travelling makes Rhae so ill, and usually takes a day or so to get over and I feel she has been through enough already. Hopefully they will agree and we can get home and just relax the rest of the week!

Thanks to each of you for the continued prayers. God has so abundantly blessed us over and over, not just the last few weeks, but for the last 2 years with my pregnancy and Rhae's joyous being! Please pray for a safe trip home for both us and my mother. Please pray for a friend, Ashley, who is in her 6th month of pregnancy with her 4th child. She has been put on bed rest for the remainder of the pregnancy and needs several more weeks for the baby to mature before birth. Also, as you say your prayers, please pray for the sick children of the world. Being here puts us in contact with so many parents of children who are very sick and those who have been and are healing. It makes you realize how blessed you are to have healthy children when you sit and talk with some of these parents.

Guess Where We're Going?

Yep, you guessed it. We're headed to Omaha. I talked with Rhae's doctor today and we are going for surgery on Thursday. I've been trying to find a flight, figure out a way to get my mom there with us, find a hotel room (because the Rainbow House where we would normally stay is booked), and find a rental car. Of course, the college baseball world series is going on out there right now, so there a very few rooms and very few rental cars available, and the ones that are are ridiculously priced! So, I'm not making this a long post. Just wanted to keep everybody updated that has been so kind to keep up with us over the last few weeks. We will fly out sometime Wednesday and Rhae's surgery will be Thursday at 12:30. Please keep us in your prayers!

Don't Count Your Chickens Before They Hatch!

Well, I guess I may have jumped the gun on my last post. I thought things were looking up and we were on the downside of the hill. Wrong! Thursday night, shortly after my post, Rhae became a little more restless and was starting to have some more pain. It progressed through yesterday morning, and finally, around lunch yesterday, I called Dr. Chu to see if we could come in and let him look at the arm again because she seemed miserable again and the splint had slipped a little. He said he would be in a meeting, but to come in around 2:00. So, we went in then and started with an xray. After the way things have been going for us, do I have to tell you what we found? Yep, it looked worse. So we took the splint off and Dr. Chu made a new one and we put in on and redid the xray hoping it would look a little better, but no such luck. :( He said he was concerned that with her being a baby, she is not going to be still and it is just going to keep causing her more problems, and thought we probably needed to go ahead and have the K-wire put in. He tried to call our ortho in Nebraska, Dr. Esposito, but his office said he was out until Tuesday. When I got home, I called his office to see if they had any way of getting up with him, but they said he was out of town, so I emailed him the latest xray and explained what was going on, hoping I would hear from him before Tuesday. Well, he called me this morning and said he got the email and he is not as concerned about how the bone looks as he is at how much pain Rhae is in. He said he really didn't want to have to go in and fix the arm because she is just so small and the arms usually do well on their own, but he will do it. I told him I really don't want to have to resort to surgery, but she just doesn't seem to be getting much better and honestly seems to be in more pain now than she was last week. I told him this has been hard to handle, but I could endure it if I just could see a light at the end of the tunnel and asked him when enough is enough and when we should throw in the towel. He said technically, by now, it should be showing some sign of healing and she really should be feeling better. He said that sometimes when kids are on narcotics for extended amounts of time (like Rhae has been the last 13 days) they become miserable while taking them and suggested we try giving her plain Tylenol instead of Lortab for a few doses and see if it makes a difference. He told me to call him on Monday if she didn't seem to be feeling better and we would probably proceed with surgery,

So here we are now, just waiting to see what will happen over the next 36 hours. I really am worried that we will have to go to Omaha for surgery, which means trying to figure out getting a flight out and then getting there, because nobody flies non-stop from here to there. So, please keep us in your prayers and I will do my best to keep everybody updated.

A Good Day

Ok, so I know you're thinking...WHAT?!?!?! 3 posts in one week! Don't get used to it because you know it won't last! :) Rhae had a fair night last night. Her pain wasn't any better, I just think the 5 hour joyride we took yesterday wore her out. She gets so uncomfortable in her carseat and we usually make plenty of time to have her out in between coming and going so that it isn't a terrible trip on her, but our circumstances were a little different yesterday. So with Valium, Lortab, and Motrin and being worn out, it was a little better. We woke up this morning and just started slowly getting ready. I was a little nervous, but very anxious, about getting the splint put on. I didn't want Aidan to have to tag along because he gets so bored, and also I didn't know how bad it would be and he has been traumatized by the whole arm deal enough already. So I called my friend Beth who has 3 boys and asked if Aidan could hang out with them for a while. She is so wonderful and always so willing to help anyway she can!

So Rhae and I took off for Dr. Chu's office, and when we got there, she was already becoming miserable. I gave her a dose of Lortab to help calm her a little (she had already had some valium earlier) and help when they put the splint on. She was so pitiful...she just cried and laid her little head on my shoulder, trying to doze off, but would wake up crying like she has been doing at night. Everybody commented on how she must be hurting and miserable because she was not herself. Well, we go back and Chu measured her arm for the splint, which is made out of lightweight fiberglass covered by a gauzy covering. We unwrapped her, and it only took about 5 minutes to get the splint fitted to her arm and then it was wrapped with an Ace bandage. Before the fiberglass was applied, Dr. Chu wet it and then wrapped it, and as it dried, it hardened into a stiff splint. It covers the outside of her arm from the top of the shoulder down around her elbow and extends under her forearm to her wrist. Like I mentioned, it is then wrapped with an Ace. A sling was devised out of a stockinette that is used to cover these normally, which I eventually had to remove because if kept slipping off. Well, let me tell you. Rhae fussed the whole time we were putting the splint on, not as much out of pain, but more like she was aggravated because she had no support on the arm. Well, I sat her up on the table, and lo and behold, my baby reappeared!! She was smiling and laughing and talking to everybody in the room, and was holding her little arm up (which looks like it is a cast) for everybody to see! We went back out into the office area, and EVERYBODY commented on how much more comfortable and happy she was! she was smiling and talking and showing off, as normal! Everybody made the comment that they should ALL go hug Dr. Chu's neck for "fixing Rhae!" They are so used to seeing her in full force and can't stand for her to be sick! I swear, it's like a huge extended family up there (some even claim to be aunts and cousins! :)

So Rhae stayed fairly happy the rest of the day, really up until about 7:30, and I think she just didn't have any pain medicine in her system and her little arm probably was sore, because the splint is still a little heavy and I worry about it making her shoulder sore. She went to bed around 9:30 and it has been 2 hours and I have heard very little out of her!

The other part of my day that made is so wonderful, is when I got home with Rhae, I saw I had missed a call from my friend, Brittany. I called her back and she informed me we were going somewhere tonight, either to dinner or to have our nails done. Well, seeing she has the passion for Mexican like I do, of course I chose dinner! She picked me up at about 5:30 and we headed to our favorite El Ranchero Loco. We had yummy chips and dip and cheese sauce, and then she ordered a fajita taco and I ordered a fajita quesadilla, which when they came, we decided the only difference was her tortilla was wrapped and mine was folded! We had great food and great conversation, and it was nice to be an adult having a nice dinner with another adult again, especially since I didn't have to correct anybody every other bite, or try to entertain someone to keep them from crying! So, we finish our dinner and Brittany asks if I have to be home by a certain time. I tell her no and she says we're going somewhere else! Yippy! Well, bless her heart, she took me to get a pedicure! The thing that touched me about it more than anything was that she didn't even get one...just me! It made me feel very pampered and cared about! :) Thanks, Britt! I told you I don't have a big inner circle, but you are quickly working your way in!

So that's been my good day, and I have to tell you, I feel so much better. I'm still tired, but I didn't feel like I had to fight my demons all day...thanks to everyone who said a special prayer for me! I feel things are finally starting to look up in the Busby household!

Round 3

I feel like I have stepped into the ring with (insert name of the toughest person you can think of) and they have let me have it. I have to say, I can almost identify with Job at this point! You think you are at your lowest and you just keep getting more. I have a lot going on that I won't even go into here, and then there is my sweet baby girl. We got out of the hospital late yesterday afternoon. I went down to xray and asked to see her films of her left arm that was done on Monday night because I wanted to compare it to last week's film. Well, much to my surprise, the break was worse. The displaced area has gone from about 1mm (as seen in the last post) to now about 1/2 the bone width. It is more sensitive and she is in more pain. I ran out to Chu's office to let him look at it with me to make sure I wasn't seeing something that wasn't really there, then I came home and called Dr. Mary Peterson-Suri in NC, who also has 2 kids with OI. She is a God send to the OI Parents who have the privilege of knowing her, always giving of her time and knowledge. I sent her the xrays and also called a friend with 2 OI kids in TN. Everybody agreed they could see the difference. I had tried to call our doctor in Omaha, but it was after 5:00 and I got an answer machine. Mary gave me a different number and when I called, his answering service said he wasn't on call. Mary believed Rhae needed a small wire, similar to a rod, put in her arm to help stabilize it, as there was no evidence of healing after 11 days, increased pain, and increase in the fracture area. I emailed Dr. Esposito and waited to hear from him today, not knowing if we would need to head out for surgery or what. I talked to him this afternoon at 1:10 and he suggested we see our ortho in Birmingham for a splint to be applied and try the conservative approach at healing before proceeding with surgery because Rhae is small and young, and they often can heal on their own at this age. So, at 1:20, I was on the phone with Dr. Killian's office in Birmingham begging to be seen today. The last few nights have been horrible. Rhae was definitely in pain, and I was giving her everything I could and couldn't keep her comfortable. Well, they said if we could be there by 3:45 they would see us. I called Jay home from work and started throwing stuff together. Amazingly, we made it there right on time and were seen right away.

This is where things really started for me today. Dr. Killian didn't agree with Dr. Esposito's plan and told us to keep her wrapped just like she has been for the last 10 days and she would feel better by Sunday. He said the hematoma needed to dissolve and make it sticky enough for the bones to stick back together to heal. I questioned this and mentioned that Dr. E had recommended a splint that I couldn't remember the name of, but it started with an S. He called the name of it and said it wasn't possible because they didn't make it for children. I assured him Dr. E had told me this was what we needed and he is familiar with Rhae's size and had seen both sets of xrays as well. He proceeded to tell me he couldn't put anything on her, that putting a rod (even though I said wire) in her arm wasn't even possible because she doesn't have anterior bowing and it would do no good, and the only thing he could do was put her in a body cast and she would look like the Statue of Liberty with her arm up, and the cast going all the way around her torso and down to her waist. (1) The wire would be put in for internal stability, not to correct bowing, and (2) casts are a big no-no for this break in OI kids! I asked him what we should do about the pain and reminded him I was giving her max doses of Lortab, Motrin, and Valium. He then told me (with a straight face) we should go home and try our best to cat nap during the day so we could stay up with her all night. I was livid--and I'm still so mad, I'm even tearing up about it now! I looked at him with what had to be the blankest stare I could ever have, then turned and started putting Rhae in her carseat. He said something about letting him know if we needed anything. I was real proud of myself that I was able to bite my tongue and remain calm and level headed during the whole visit (which is not my usual--i guess I'm just tired), but I knew if I was going to maintain my composure I had to get out of there. I said loudly to Jay that I guess I shouldn't have given her any Lortab before we got there and then maybe if she would have screamed and hollered for him like she has for us the last few days, maybe they would have taken her seriously and done something! He even mashed all over the area of the fracture while she flinched and whimpered and now she doesn't want me anywhere near the arm. I walked out fighting tears and throwing doors open as hard as I could! i wish I could have slammed them with the same strength! I got outside and Jay went to get the car and I just lost it! I really felt like we had just been blown off and my daughter had not really been considered! I felt alone in a big, unknown world. I felt like Dr. Killian didn't care whether my daughter hurt or not, or whether or not her arm healed incorrectly, only to cause more fractures down the line. I tried to call Mary for advise and was unable to get her. I tried to call Laurie because she has been through the same ordeal with her daughter and couldn't get her. Then I called my sweet friend, Christiane, who is always willing to listen to my rants and raving, regardless of time or place! I filled her in on what had happened and she encouraged me to call Dr. E back with everything we had been told and see what to do next. Christiane and I have never met in person. She has a daughter with OI as well, who is only a month older than Rhae. She has been my savior for the last several months. We talk on the phone a lot, and are so much alike. She's my OI soul mate and I love her! I realized after we got off the phone just how much love I felt for her and how much she feels for me and my family, because she was as irrate as I was at that point! (I know you're reading this, and I know I told you all that today, but again--thank you! You're always there for me when I need you! I don't want anything to happen to sweet Trini, but I hope at some point, I will be able to repay you for the support you have given me!)

So, I called Dr. Esposito, and while he said there were several things that Dr. Killian told us that were accruate, the bottom line was Rhae is in more pain than necessary and something needs to be done to try to correct that. He told me, "I don't like to see these kids in pain anymore than you parents do." He explained what type of splint he would put her in and offered to call Linde or Dr. Chu to ask them to do it and explain how to make it and put it on. I gave him Chu's numbers, and a little while later, he called back to let me know he had spoke with him and explained everything we needed to do and he would make the splint tomorrow. Chu called a little later to relay the info to me as well, so tomorrow, we will meet him at the clinic around noon to have the splint made and applied. He also said if it doesn't begin to heal, we will definitely consider putting in a wire for stability. I cannot tell you how wonder Dr. E is, though I'm sure you're getting an idea. Dr. Chu is also a good friend and takes such good care of us. I am forever grateful for everything he does for us!

I told Jay on the way home that I am tired, and I am through with Killian. I have never felt so helpless and I do not intend to accept anything but the best care for Rhae. Just because she has OI does not mean that she should have to put up with what she is now. If Aidan broke his arm, he wouldn't be expected to just leave it wrapped up and hope it healed, pain and all. No, it would be set and casted, and I feel Rhae deserves the same care, even though she can't have a cast. I am not going to let stupid decisions affect her life now and possibly in the future. I'm not willing to take the chance of this arm possibly not healing correctly and her ending up with a deformity that will only continue to break when she crawls, uses a walker, or wheels a wheelchair. OI does NOT make her any less deserving of good care and I will loose everything I have if necessary to make sure she gets that care! Jay and I have decided if Chu is ok with it, he will deal with our ortho problems (other than surgery) from now on. We have every confidence in him and his ability, and believe that he can handle anything that should come up with the advise of Dr. E. We will have all our surgeries in Omaha (somehow).

My children mean more than anything in this world to me and I was reminded of that today. Our OI Parent support group nicknames parents Momma and Papa Lions, and the children snowflakes. Like snowflakes, all OI children are fragile and beautiful, and no 2 are alike. The reference to the lions has to do with the advocates we have to become for our children. My Momma Lion came out in me today, and while she can't understand it right now, I only hope that one day, regardless of anything else, Rhae will understand how hard I have and will continue to fight for her (if only I could do the same with federal funding, but that's a whole other post!). I hope I never have to fight like this for Aidan, but I hope he knows I would go to the ends of the earth for him.

The last 10 days have probably been the worst I have had in the last 2 years. It's been one fight after another, and while I don't have the bruises to prove it, surely the bags and dark circles under my eyes count for something! I didn't mean to get so emotional in this post, but if you take nothing else from it, just remember that not all doctors are willing to listen to you as a parent, spouse, child, whatever, and if you don't agree with a plan, find another doctor who will listen to you. You are the one who spends time with their patient. Nobody knows them like you do!

Thanks to everyone who has prayed for Rhae. Please continue to pray for her comfort and healing. Pray she will not need surgery to fix this arm. Please pray for my strength, as I am beginning to feel weak. I know prayer will help me fight these demons and restore my strength. thanks also for the prayers for my Daddy. He did wonderfully today! God is great!