The Busby Buzz

All Hallow's Eve 2009

2009-11-09T23:30:00.005-06:00

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!

2009-09-24T22:51:00.016-05:00

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...

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

2009-06-21T23:31:00.002-05:00

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?

2009-06-15T23:53:00.002-05:00

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!

2009-06-13T15:04:00.003-05:00

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

2009-06-11T23:25:00.000-05:00

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

2009-06-10T22:57:00.002-05:00

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!

Anybody get vodka?

2009-06-08T23:32:00.002-05:00

Ok, first, let me start by saying, those of you who REALLY know me are probably wondering what in the world THIS post is about!! For those of you who don't, #1, I haven't had a drink in I can't remember when (probably almost a year now), and #2, I've never cared for vodka! But, one of my FAVORITE comedians, Ron White, once said something that has stuck with me and really sort of epitomized how I'm feeling this week..."I believe if life gives you lemons, you should make lemonade...(strategic pause)...and try to find someone who's life has given them vodka and have a party." I know things could definitely be a whole lot worse, but I have to tell you, I'm really feeling beat up after this past week. I've talked to a few of you and several of you probably already know, but I sit typing this from Rhae's hospital room. Yep, that's right! Little Miss went and landed herself in the hospital Sunday afternoon.

So, if you keep up with us, you already know about the arm and the sinusitis. Well, Friday we got home from the doctor and the diarrhea started so I waited to start the antibiotic because I didn't want to make her stomach worse. Sometime Saturday, her temp started climbing again, and she completely stopped taking anything by mouth. If I tried to give her medicine, she spit it out at me. She would take a sip of her bottle then push it away. She was miserable. My sister, Molly, went to CVS for me and got some Tylenol suppositories, and while I did get one in her, 2 hours later, her temp was 103. I snuck a little Motrin in her at that point, enough to break it, but she was still miserable. Still in pain, but I think she felt so bad she really didn't care. Saturday night was long. At some point I checked her temp and it was 104. Tried to give her some Motrin and she threw it up. I had to go and wake Jay up so we could change the sheets and change Rhae, which don't forget includes unwrapping the arm, getting a onesie off of her and a new one back on (not easy with a painful broken arm), then wrapping her arm back to her chest. Sunday morning, it was the same. Temp kept going up, she was becoming more lethargic and drinking very little. Finally I called Linde (our AWESOME nurse practitioner friend) to see if she thought I should be worried about anything else since the fever was steadily going up and I wasn't seeing improvement. She mentioned she worried about pneumonia because of her arm being broken and her decreased mobility. I then called Dr. Chu who said he wanted us to go to the ER and then be admitted for fluids and IV antibiotics.

So, Jennifer and Daddy came over and Jennifer and I brought Rhae to the ER while Daddy and Aidan hung out. Jay was in a golf tournament that day and I didn't want him to stand his partner up, so he came on later. Well, we saw a really nice, caring resident (oxymoron, I know) who had wonderful bedside manner. Of course, I learned later he's a surgical resident--go figure! He won't even need his bedside manner! Anyway, we had a chest xray which he said was clear, but I honestly wonder if it was early onset, or maybe just not a great film, because she had SO many other symptoms. He recognized right away that regardless of what the chest xray showed, she was obviously sick and something was going on and knew she needed to be admitted anyway. It's always nice to find somebody who treats the patient and not a lab, xray, etc!

So, here we are. Sunday night was horrible. Rhae did not want to sleep, so it was almost 1am before I finally got her down. I think she was very uncomfortable! We were woke up early this morning, and she fought a nap hard today, on top of the fact she is getting SoluMedrol IV every 6 hours, which hypes her up a little! We unwrapped her arm today to change her clothes and let her arm "breathe" and her little thumb looked as if it was out of joint, though she was moving it. Her hand was swollen, so it was sort of hard to tell. I called Dr. Chu and asked him to stop by later. When he got here, he said he thought it looked ok, and it did look better, but we would go ahead and xray it because he wanted to check on her arm as well. This was at about 6:20pm. Rhae was fussy on and off, but finally around 7:30pm I realized she was really starting to act like her arm was bothering her, looking at it and crying and whining. Jay fixed her a bottle with some Lortab in it and she was asleep by a little after 8:00! She was so wiped out, I had no doubt she would sleep for a while. Boy was I wrong! The xray guy came in at 9:00 and really wanted to go ahead and get it out of the way instead of waiting until tomorrow so it could be read first thing. Tried to explain to him I would come read it myself, as I had done better on a few done here than the radiologist, but he really wanted to get it done. Well, Rhae apparently heard us and woke up. Xray and breathing treatment done and she was WIDE awake! So much for my hard work! i did everything I could think of, except pacing the floors because we did that all night last night (on concrete) and for an hour tonight, and my back was killing me. I finally got her to ease off around 11:20, at which point I jumped in the shower then headed out here to type this up.

So that should bring you all up to date for now. Hopefully we will be home tomorrow by lunch, so if anybody's life gave them vodka, feel free to stop by...we'll be home all week!

P.S. Please keep my Daddy in your prayers Wednesday as he goes in for his procedure.

What a week...and we're only halfway through!

2009-06-03T16:54:00.003-05:00

Well, it's been an interesting week in the Busby household. Things started out kind of slow on Monday. We got up and got ready and headed to the library for story time. We listened to 3 stories about pirates, and Aidan won a bubble sword, which of course is too cool! We then headed to the bank to take care of some business and went to Napoleon's for lunch--yum yum! After that, we headed back home to just relax for a while. Jay called and...let me interupt the story to state that a few months ago, we learned that (I say this sheepishly) the WWE (wrestling) would be coming to Birmingham. Aidan has really gotten into this crazy soap-opera drama, so Jay and I have been letting him watch it on Monday and Friday nights only when one of us watch it with him to make sure nothing gets too inappropriate. It's really not that bad, and definitely not any more violent than many of the shows and cartoons on TV now that are geared toward children. It's actually quite funny and entertaining--like a soap opera sans the sex scenes! Ok, back to my story. So we had considered getting tickets at one time, because they are very inexpensive, but opted not too because it was so far off. Well, Jay called Monday afternoon and said he was wondering if they would have any tickets left. I had thought about it too, because we are always trying to think of things for Aidan because it is hard to find things to do with Rhae. So I looked on the internet, and they had some tickets left and they sounded like good seats and very affordable. Well, I decided nothing would tickle my Aidan more than to be able to see these men in person, so I started typing in my payment info. Just as I hit the accept button to purchase the tickets, it happened. Several of you already know, but for those of you who don't, Rhae has been pulling up and sitting on her lower legs and playing for the last several weeks. She loves to be able to do this as it gives her some independence and gets her up off the floor. She has pretty good balance, so it hasn't been an issue. Well, she was sitting up like this at the hearth looking at her little books and I'm not sure if she pushed back or exactly what happened, but somehow, she tumped over backwards, and when she did, her left arm broke her fall (no pun intended). Aidan and I both heard what I now believe is the worst sound I have ever heard in my life. There was a POP--loud and sharp, similar to breaking a stick or chicken bone--and I knew it was broken. I jumped up and grabbed her up, pinning the arm between the two of us to immobilize. Before I picked her up, I realized it was likely displaced by the look of the way the arm was laying, at almost a 90 degree angle in the middle of her upper arm, above the elbow. I was worried about her possibly needing surgery if it was severely displaced. Aidan heard the sound as well and immediately began crying. So here all 3 of us are crying and me trying to calm everybody down. I convinced Aidan to stop crying because I needed help and he went right into crisis mode. It absolutely amazed me, as well as made me sad. I'm so glad he was here, because I couldn't have handled it by myself, but it breaks my heart that my 6 year old has had to grow up so quick and be able to handle these types of things. He got the phone and called my Daddy for me so I could have him come pick us up to go get an xray. He then called Jay's work so I could leave a message to let jay know what happened and where we were. I had on a tank top and mentioned I needed to get a shirt. He asked which shirt I wanted, went and found it, then came back and when I said i didn't know how I would get it on because I didn't want to lay Rhae down, he told me to bend down and he would put it on me, which he proceeded to do. He then gathered up our bags, shoes, everything we needed and helped me outside. I'm so proud of him! We went on up to Chu's office and had the xray done, which I will warn you now, I am posting at the end of this, so if you don't want to see it, stop at the end of my story! Linde, who is always so wonderful and always seems to be there during our crises, called Omaha for me and talked with Dr. Esposito, who suggested no surgery but just immobilizing the arm. So now, Rhae has her little arm wrapped to her chest with a bulky Ace bandage and is miserable not being able to have 2 hands. I have been giving her Lortab around the clock and Valium and Motrin several times a day, so I am keeping her fairly comfortable. Nights are a different story.

I told Jay it was important to me for Aidan to go on to the wrestling match, #1, to help him get his mind off what he had seen, and #2, to help him realize that Rhae is not always priority, and even when something bad happens, he can still do things that are important to him. Unfortunately, this is not always the case in our situation. So, Aidan and Jay went on to Birmingham and had a BLAST! Jay said it was a lot of fun, Aidan was flipping out, and the seats could not have been better if we had bought them weeks before the event instead of 5 hours before it started! Aidan came home the next morning (2am) all smiles telling me about all the cool stuff they had seen and everything that had happened! It really brought a smile to my face (even if it was wretling), that my baby had been able to enjoy something he loves so much!

Since then, we have just been in slow motion I think. Rhae is trying to adjust to this arm and it has not been easy. I'm still hearing that sound that I never expected to hear from her bones and I swear, it's almost like it haunts me. We are adjusting to having to do everything different and hopefully tomorrow we will get out in the car seat if we can figure it out! If not, oh well!!

I hate to be selfish, but this post, I'm just going to ask for some personal prayers. Please pray that Rhae remains comfortable and healing comes quickly. Pray that this does not traumatize Aidan, because it still seems to be bothering him. Also, my Daddy is having a minor procedure done next Wednesday, but because of his low platelet count, it makes it a little more involved. He will receive platelets during the procedure and they will watch him closely for infection afterwards. Please pray that God will give his surgeon a skillful hand, that all involved will properly wash their hands, and that the platelets will take and he will be fine. Thanks!

This is actually her left arm, but the film is turned around backwards.

Let's Not Forget

2009-05-23T15:04:00.004-05:00

To many people, Monday is just part of another three-day weekend and the beginning of summer with most schools officially being out. To others, it means much more. To those people, along with countless veteran's of our great nation, Memorial Day is an important reminder of those who died while protecting our freedom.

Many people don't know the exact origins of Memorial Day, myself included, so I decided to look into it. I know we celebrate our fallen soldiers, but wanted to know when it started, how, and why. Here's what I found...

"Three years after the Civil War ended, on May 5, 1868, the head of an organization of Union veterans — the Grand Army of the Republic (GAR) — established Decoration Day as a time for the nation to decorate the graves of the war dead with flowers. Maj. Gen. John A. Logan declared that Decoration Day should be observed on May 30. It is believed that date was chosen because flowers would be in bloom all over the country.

The first large observance was held that year at Arlington National Cemetery, across the Potomac River from Washington, D.C.

The ceremonies centered around the mourning-draped veranda of the Arlington mansion, once the home of Gen. Robert E. Lee. Various Washington officials, including Gen. and Mrs. Ulysses S. Grant, presided over the ceremonies. After speeches, children from the Soldiers’ and Sailors’ Orphan Home and members of the GAR made their way through the cemetery, strewing flowers on both Union and Confederate graves, reciting prayers and singing hymns." (US Department of Veteran Affairs)

In researching, I did find there is some controversy as to the actual first Memorial Day celebration, as well as the birthplace of the holiday. One of the first occurred in Columbus, Miss., on April 25, 1866, when a group of women visited a cemetery to decorate the graves of Confederate soldiers who had fallen in battle at Shiloh. Nearby were the graves of Union soldiers, neglected because they were the enemy. Disturbed at the sight of the bare graves, the women placed some of their flowers on those graves, as well. Macon, GA; Columbus, GA; Richmond, VA; Boalsburg, PA; and Carbondale, IL are among the 25 cities that claim to be birthplaces of the holiday.

In 1966, Congress and President Lyndon Johnson declared Waterloo, N.Y., the “birthplace” of Memorial Day. There, a ceremony on May 5, 1866, honored local veterans who had fought in the Civil War. Businesses closed and residents flew flags at half-staff. Supporters of Waterloo’s claim say earlier observances in other places were either informal, not community-wide or one-time events.

By the end of the 19th century, Memorial Day ceremonies were being held on May 30 throughout the nation. State legislatures passed proclamations designating the day, and the Army and Navy adopted regulations for proper observance at their facilities.

It was not until after World War I, however, that the day was expanded to honor those who have died in all American wars. In 1971, Memorial Day was declared a national holiday by an act of Congress, though it is still often called Decoration Day. It was then also placed on the last Monday in May, as were some other federal holidays.

To ensure the sacrifices of America ’s fallen heroes are never forgotten, in December 2000, The National Moment of Remembrance Act was signed into law, to encourage the people of the United States to give something back to their country, which provides them so much freedom and opportunity. The National Moment of Remembrance encourages all Americans to pause wherever they are at 3 p.m. local time on Memorial Day for a minute of silence to remember and honor those who have died in service to the nation.

So, whether you are at the beach, at work, at home, or at The McWane Center (where we will be with some OI friends), please remember what this holiday is all about and remember to observe a minute of silence at 3pm. Thanks to all our service men and women who have served us in the past and continue to fight for this great nation!!

I'm the best postponer in the world!!

2009-05-17T23:49:00.006-05:00

Sigh...I come here daily and THINK about posting, but dread it because it has been so long. I feel like I have so much to catch everybody up on, and really do want to post more often, but then I think about it and it makes me tired. I need about 5 more hours in a day.

Rhae had her first birthday April 9th (yes it's been that long since I posted). I got her ears pierced on that day and they look adorable! She didn't cry, she hasn't messed with them, and they haven't been infected. I've had people tell me they didn't think I should have done it, but I think they are so cute on her. She is so girly anyway that they just fit her. Jay was working an outage during the week of and week after Rhae's birthday, so we didn't have a party. I did make her an Elmo cake, though, and she, Aidan, and I celebrated at home. She loved the cake and had a ball getting into it.

Aidan finished up baseball for the year, and unfortunately, I think it will be the last. Apparently, he did not inherit the love of baseball that his Daddy and I have. Right now is not that important, so I hope when he gets older he will change his mind! Aidan has also lost another tooth and got a buzz cut. It took me a few days to get used to it, but he loves it so I guess I do too!

Well, my Momma has come and gone. She's only been gone a few days, but we miss her so much already. While she was here, we went to Omaha for Rhae's appointment...many of you may not have talked to me since we got back, so here's a quick rundown. We had a great visit. The doctors were wonderful. We are basically waiting on Rhae to start standing and her legs to break on their own before we go back for rods to be put in. Dr. Esposito said that will probably be in the next few months. We met several OI families while there and fell in love with the Novak's from TN. Laurie (the mom) is a member of the OI Parents group that I am on on the web, and it was nice to meet them in person! She has 2 OI kids (adopted, but natural brother and sister) that are absolutely adorable! I have wanted to meet Robbie and Alexia from day one and I am so glad I finally got the chance! They have type III, and are living a wonderfully active life! They are full of spunk and everything I want Rhae to be. Both are independent walkers, but Robbie was in a wheelchair during our time there due to a broken leg and pain in the other leg. He had been running fever for about 2 weeks, and while there, found out not only was his femur rod migrated out of place, but he also had a serious bone infection that had already started eating away the bone around the lower end of his rod. Subsequentally, he had to stay in Omaha and have surgery to remove the rod, remove pus from the bone, and start IV antibiotics. He is doing good now, but still will have to be on antibiotics for at least 6 weeks (mom is doing them every 6 hours at home), wear a leg brace because the rod was removed, and have to rely on his wheelchair because the bone is so weak from the infection and not having the rod to help support it. I fell in love with this little boy while there (he's 5) and he and I had wrestling matches (yes, that's what I said) and I became a pony giving him rides! We had a ball, and he nicknamed us Cargirl and Fishboy! I miss them already! Oh--forgot to mention, while in Omaha, Rhae decided she was going to start pulling up on everything! She is also trying to push up on her legs and stand. don't know why she thinks she can do this without learning to sit first! She's really starting to scare me!

Well, I could go on and on, but I'm tired already and feel like I'm probably leaving more out than I meant to. I wish I could find the time everyday just to make a little note about what's been going on, but I guess that's just dreaming!

So, Rhae's been saying her prayers, and here's some people we want to ask you to pray for:

1. Robbie Novak--my little buddy from TN. He had his surgery and is back home doing well, but it's going to be a long recovery. He is SO active and doesn't need to be walking on his leg until it heals. He's also going to be on antibiotics for several, several weeks.

2. Laurie Novak--mother to wild man above...draw your own conclusions of why she needs the prayers! :)

3. I've recently become friends with a girl down the road and just read on her blog tonight that she has a brother in Iraq. Please pray for his and his batallion's safety, good judgement, and that their message will be received for the right reasons. I'm so tired of hearing everybody talking down about soldiers when they are risking their lives to make ours better. God Bless America! We take for granted how lucky we really are!

4. I'm taking the kids to the dentist on Tuesday. Aidan tends to freak out a little in new situations, so please pray he will do ok. I'm not expecting the best news with Rhae, as I'm pretty sure the 2 teeth she has coming in will be DI teeth (dentogenesis imperfecta==like her bones, but teeth--OI kids have 50/50 chance of getting it and it can cause lots of problems). Just pray they won't be severe and that we will be able to prevent a lot of problems for her early on.

5. Halle--my neice out of the blue started running a temp this morning. It has been up to 103.8 twice today and is not staying down as long as it should with Motrin. She has tubes in her ears and in the past, those have been the culprit of most of her fevers. I'm hoping she hasn't had a tube come out. I know kids run fever and get sick all the time, but it just seems my sweet Halle has had a really hard time so far and I can't stand her feeling bad.

6. Sean--We met a mother and her little boy while in Omaha that were so sweet. He has had a few heart surgeries and looked so good. We talked to them for a long while. A few days ago, I had a comment from her on Rhae's website that they had gotten some bad news that day and meeting us helped her put things in perspective. Please pray that little Sean is ok and his mother, Jacqueline, will continue to remain strong for him. Also, please pray that Rhae and I will always be able to help others through her condition, even when we don't know it. It's so nice to hear that the little time we all took out of our day that day helped others.

Where has the last year gone?

2009-04-08T22:48:00.008-05:00

I have not posted in so long but have been meaning to! We have had not a lot going on, but quite a bit at the same time, if that makes sense! First of all, today and tomorrow are big days in the Clem/Hynniman/Busby family! My adorable niece, Halle, turned one today! I went over tonight and she and Rhae were so silly together, and then when I got ready to leave I picked her up and she laid her head on my shoulder. I held her the EXACT same way I did one year ago tonight and it took all I had not to bust out the tears! I love my own children with an aching deep down inside of me and never thought I could love another child as much as I do my own, but Halle has proved me wrong! I always knew I would love her, even before she was a possiblity, but I think maybe the bond I created with her the day she was born (not knowing what would happen with my own child) is much stronger than I ever thought because of what I was going through. I have not been able to spend the time I have wanted to with her over the last year, but I hope she will always know her Sissy will always be her #1 fan!

The other big day is tomorrow! Rhae will be a year old! It is hard to believe that one year ago tomorrow, at this exact time, I was just coming out of surgery and getting to see my family and friends for the first time since my daughter was born and was alive! It's also the time that I was able to talk to Mandy on the phone and inform her that Rhae was alive and doing well. There are several things from the last year that I am hazy about, but that night is still burned in my memory like it was yesterday. For those of you who don't know, may not remember, or just want to be reminded, here's the rundown of what happened...I had been at the hospital all day with Mandy, Darrin, and Halle, trying to support them as much as possible and also to get as much time with Halle as possible, since I only had a week before Rhae was supposed to be born, and from there, we didn't know what would happen. I had felt good all day. I had felt very few contractions--actually less than I normally did. At 5:55 pm, I was helping Mandy try to get Halle to latch on and breastfeed and she finally did. I was going to wait until she finished, then clip Halle's nails and go home. While standing by the bed with Mandy and Halle, I felt sort of a small pop and trickle, but honestly thought it was just that whole baby kicked my bladder thing. Well, a few minutes later, I figured I probably needed to try and empty my bladder. When I sat down, I realized my water had broke (which makes my next statement kind of funny--I guess I was scared). I walked out of the bathroom, glad to see Halle still eating, and told Mandy and Darrin, "Umm...we've got a little problem. I think my water just broke." Mandy freaked, wanted Darrin to take me home, started calling everybody, etc. I decided I would walk around to Labor and Delivery and have a friend check me before we started our 2 hour trek to Birmingham. Well, when she did check me, I was grossly ruptured, contracting regularly, and 5cm dilated. After a long discussion with the doctor about delivering here vs. going by ambulance to Birmingham with the chance Rhae would probably be born in route, we finally started some medicine to stop my contractions and headed to B'ham. I was 6cm when we got there, and within 30 minutes, I was headed to surgery, still not knowing whether my daughter would live or not. My wonderful doctor took great care of me and it didn't hit me how scared and nervous I was until he told me he was making the first cut. I think that made it extremely real all of a sudden! Well, Rhae came out at 10:31pm screaming her head off! It was a glorious sound! She cried for the next several hours, and it still bothers me to this day that I'm pretty sure she was broken and nobody picked up on it until a month later looking at x-rays. But, she did better and better every day, and came home 6 days later! The last year has been trying none the less, but has been so glorious! My life has taken on new meaning and I've learned to slow down and smell the roses...not to take things for granted...to love like I never knew how before! I've said it before and I'll say it again...I know it's so Jerry Maguire-ish, but she completes me! I never knew a part of me was missing until Rhae came home. She's just proof that God is in control and always knows what he is doing!! I could go on and on about Rhae, but most of you know how I feel and how special she is to everyone she meets! Rhae is now pulling herself across the floor, along with rolling. She wears out very easily, but is getting so strong doing it! She is quite the meany, and thinks it is funny. I told her "no" the other day and she looked at me like I was crazy. I then popped her little hand and she just laughed at me. I popped it again...same thing! She thinks it's funny! How in the world am I going to discipline a child who is destined to be bad when I'm scared I'm going to break her? :)

Aidan FINALLY lost his first tooth Saturday night! He was so proud and even more proud of the $5 the tooth fairy left. Apparently everybody is suffering from inflation! He has another one that will come out soon. Saturday night, I asked him how much he thought his tooth was worth and he told me $800. I don't know if he has found something he wants or what, but when my stepdaddy asked him how much money he thought he should send him, he also said $800! Momma called the next day and said if I needed a loan I should just ask and not put Aidan up to it! :) He's played 2 baseball games so far and has another one tomorrow. He is getting a little better with each game. This is his first year to play machine pitch and for some reason, has the hardest time hitting from the machine, but if you throw it to him, he can hit it...go figure! He's heading to the zoo tomorrow with his grade and is very excited! We went to the same zoo a few years ago with him and he had a ball! He loves animals, so I know tomorrow will be a lot of fun, especially with his friends and his Nana there (she's also a Kindergarten teacher). He is becoming such a polite young man and is the best big brother! He loves Rhae so much and will often tell me he is so glad God decided to give him a sister instead of the brother he wanted!

And, for those of you who don't know what's going on with me, I decided to start my own business last week. It's called The Busy Bee and I custom make several monogrammed (not embroidered) items like cups, mugs, mousepads, sippy cups, window decals, wall decals, etc, and also offer many monogrammed gift items and purses. I don't expect to make a ton of money (though I wouldn't mind it) but mainly started to make myself feel more productive, as I miss that part of my life. I always felt productive as a nurse and miss that feeling! So far, it's been pretty nice being productive again! Hopefully I can find some time soon to get some better pics of my stuff up soon!

We are getting closer to Omaha, so please pray that everything will turn out good and we will have safe travel. Also Rhae has been very uncomfortable for the last week or so, so please pray that it doesn't get worse. I have a friend with an OI child who is having difficulty in her life right now. Please pray that things turn around for her. She desperately needs things to come together right now. There is a new family also that I have connected with who's daughter was born in December with OI. She has been taken away from them on abuse charges and they are struggling with the new diagnosis, separation, and the unknown. Please pray for "the system" to see this family has not harmed their child and to reunite them soon! Also, Ethan Desai was born after what seems like such a long wait this week and is doing great! Take the time to thank God for this miracle!

The duck pond

2009-03-15T16:14:00.003-05:00

A few days ago, I took the kids to the pond on Spencer Street to see Brian's ducks. They don't actually belong to Brian, but Brian's family lives across the road, and when Aidan was little he would call them Brian's ducks. The title just sort of stuck. Rhae has fallen in love with ducks, so I thought it might be fun to go down and feed the ducks. They are very friendly and will come right up to you and eat out of your hand. I did get a little nervous at one point because 2 of the hens were pretty aggressive and Rhae was in her carseat, but all turned out well. She and Aidan really enjoyed them. When Aidan got out of the car with the bag of bread, they all started running toward the car and Aidan could barely move! It was pretty funny! This was also rhae's first experience in the grass. I'm still not sure if she really like it or not, but it was pretty stiff. Maybe once she can get in some soft grass she will enjoy it.

So much to talk about and so little time

2009-03-13T00:03:00.006-05:00

Sometimes this blogging thing feels like such a requirement but I can't seem to find time. I wish I was one of those people that had time to blog everyday, but I just can't find the time.

So we've had a good bit going on lately so I'll do the quick update rundown. No photos this time, though I have some and just need to get them loaded on the computer. I'll try to do that soon. So I think my best news is we finally got a date scheduled for the OI clinic in Omaha! I am SO excited. My momma is going with us so that Jay doesn't have to take 4 days off work and also so he can be here with Aidan. I don't mind leaving him over a night or two, but a whole week would just be too much. He is really starting to whine about missing us more these days when we are gone. I know it's mostly put on, but it still hurts my heart. So Momma, Rhae, and I will fly out of Birmingham early on Tuesday, May 5th and will return even earlier on Friday, May 8th. This is such a hard time for me to go, but the best time for us right now. Jay and I will have our 9th anniversary on that Wednesday, the 6th, and that day is also the 2ndd anniversary of my Granny's death. I know that sounds weird to be sad about not being here then, but it is. I miss my Granny so much and honestly, as hard as it is, I don't think about that day being necessarily bad. I don't like that it happened on my anniversary because it reminds me that she's not here with me anymore. However, I'm only sad for jealous reasons. I miss her so much but I would never want her back because I know she is exactly where she wanted to be for so long. I was telling somebody the other day I think that is the only thing that got me through her death--the fact that she had told me several times when the time came she was ready, and I knew she was with her the love of her life, my Happy, and her son, Alston, again. I knew that day truly was her homecoming and she was happier than she had been in a long time. Okay, so I didn't mean to turn this into a post about my grandmother!

What else is going on with Rhae? She's still sick. The nose is still like a faucet, though she started running fever on Tuesday. It was 103 at it's highest on Tuesday and Wednesday, and today only 101.7 at the highest. She tries really hard not to be miserable, but it is so obvious. Thank goodness for Motrin is all I can say. We saw her pulmonologist today and he said everything was good. He changed some of her medicines and we don't go back for 4 months. I really, really like him a lot! She has lost a little weight, but currently is still over 13#, barely (13# 2oz). She is really starting to talk and still won't say Momma, but says da-da, daddy, Aidan, Bubba, Buh (which I think is her form of Bo, my daddy), bye-bye, something that we are not sure what it is but is consistenly what she says when she sees Lucy (our dog), puh (puppy), cat, and my favorite, duck. I've given up on her saying Momma. She is all over the place and I promise is the happiest child I have ever seen. Anybody that wants to be happy should just come spend an hour or so with us. She smiles brighter than the sun and will keep you laughing!

I've been wondering lately if anyone knows of any banks that make tooth fairy loans?!?! Aidan has not lost any teeth and I was starting to wonder if he ever would at 6 years old now. Well, I guess he'll loose them just like he got them...4 at a time! His top 2 and bottom 2, all which came in at the exact same time are all going to come out at the same time. They are equally loose. I just hope that stops the cycle, because that child went from no teeth to literally a mouth full in about 6 weeks. At that rate, he will be completely toothless! He is just so excited and keeps talking about the tooth fairy. He is also gearing up for baseball. This will be his first year to trade in the tee for machine pitch. So far so good. No concussions or broken bones and he seems to be a little faster this year. Only those of you who saw him last year can appreciate that! He's also eating me out of house and home and growing like a weed, maybe even faster! He turned 6 in December and now wears a large to XL t-shirt (and can wear an adult small), size 8 pants only for length (his waist is more like a 6 or 7), and a size 4 shoe. Yes, you read write--a size 4! I bought him a new pair of Crocs today and I can wear them. I don't know what I'm going to do to clothe that child in a few years!

Well, I think that is it for now. I have some other stories, but they go with the pics I need to post, so I will save them. I have been reading Kelly's blog for several weeks now, and have been inspired to follow her lead. At the end of every blog, she lists a few prayer requests. Well, it seems my prayer book stays full and I believe you can never have enough prayer warriors out there, so from now on, I will try to end all of my posts with a few prayer requests. Here goes...

1. Please keep the Hurst family in your prayers as they travel home from China with their newest member today (March 13th). Unfortunately, I'm not sure of the time difference, but just lift them up anyway.

2. I have been reading a blog recently about a woman in Texas who suddenly lost her husband to cancer. They have a young son, and a daughter that is due in May. Please keep the McKay family in your prayers. I cannot even imagine what they must be going through.

3. My niece, Halle, who is one day older than Rhae, has had quite a time with her little ears. She is finally getting tubes put in on Friday, March 27th. Please keep her in your prayers that she will do ok with the anesthesia, her surgeon will be skillful, and this will relieve the pain and irritability she has experienced. Also keep her mom and dad in your prayers due to that last part.

4. This is a little selfish, but Mandy and I are preparing to sell my grandmother's house. It is a sad time but something we know we have to do. Please keep us in your prayers that we find the right person to continue in this sentimental place...a family with rambunctious (sp?) children that will fill the house will love, fun, and laughter, and a family who will care for and love the house as much as we do. I know that sounds silly, but that place has such wonderful memories for not only us, but several other people and I always want to think of it as somewhere people are happy. Also pray that right person comes along sooner than later.

5. And as always, please keep Rhae in your prayers. I know prayers have helped get her this far and I hope people will continue to lift her up as they have over the last year.

A Beautiful Spring Day

2009-03-05T15:25:00.006-06:00

Today is such a pretty day. Sunny and 70 degrees. We went outside for a little while--Rhae loves it outside--and watched Daddy wash our vehicles. Here are some pics of one of the cutest outfit ever! You can't really tell, but there is a small matching plaid square on the left thigh area (her knee!) with a little pink ladybug, and on the back, the pockets are made out of the same plaid as the shirt. I'm pretty sure they are supposed to be capris, but oh well...

Things I Want to Share

2009-03-04T23:17:00.005-06:00

I've read a few things lately that I have really felt moved to share. These two things have spoke volumes to me. The first came from my very last lesson in Esther, so this may sound familiar to some, and others may be reading it soon.

I believe in the sun, even when it is not shining.
I believe in love, even when I do not feel it.
I believe in God, even when He is silent.
(Author Unknown)

In the last few days, I have started a new bible study titled, "Becoming the Parent God Wants You to Be." It has taken me a while to get through the first chapter because it is very...I don't know the words to use--thought provoking, real, hitting home, really. It is meant to be a group study, so some of it is difficult because it gives you activities, but I'll get through it, I guess. I miss working in a group, but it is often difficult for me to commit to a group with Rhae. Anyway, in the first chapter of the study, the author, Dr. Kevin Leman, shares "A Child's 10 Commandments to Parents" from his book Parenthood Without Hassles--Well, Almost. These were disturbing to me, in a good way. They say a lot, and I dare any parent to say they can't identify with at least one of these:

I. My hands are small; please don't expect perfection whenever I make a bed, draw a picture, or throw a ball. My legs are short; please slow down so that I can keep up with you.

II. My eyes have not seen the world as yours have; plsease let me explore safely. Don't restrict me unnecessarily.

III. Housework will always be there. I'm only little for such a short time--please take time to explain things to me about this wonderful world, and do so willingly.

IV. My feelings are tender; please be sensitive to my needs. Don't nag me all day long. (You wouldn't want to be nagged for your inquisitiveness.) Treat me as you would like to be treated.

V. I am a special gift from God; please treasure me as God intended you to, holding me accountable for my actions, giving me guidelines to live by, and desciplining me in a loving manner.

VI. I need your encouragement, but not your praise, to grow. Please go easy on the criticism; remember, you can criticize the things I do without criticizing me.

VII. Please give me the freedom to make decisions concerning myself. Permit me to fail, so that I can learn from my mistakes. Then someday I'll be prepared to make the kinds of decisions life requires of me.

VIII. Please don't do things over for me. Somehow that makes me feel that my efforts didn't quite measure up to your expectations. I know it's hard, but please don't try to compare me with my brother or my sister.

IX. Please don't be afraid to leave for a weekend together. Kids need vacations from parents, just as parents need vacations from kids. Besides, it is a great way to show us kids that your marriage is very special.

X. Please take me to Sunday School and church regularly, setting a good example for me to follow. I enjoy learning more about God.

My new best friend

2009-03-01T17:30:00.005-06:00

I have a new best friend. Her name is Lane Bryant. I haven't shopped there for a while, and Tuesday I went in to look around after I washed and dried my favorite blue jeans for what I didn't know at the time would the last. When I took them out of the dryer, there was a hole in the seat. Oh well, I definitely got my money's worth out of them, as I have been wearing them for the last 3 years! The last few times I bought jeans from there I didn't really care for them, but since my body has morphed since having Rhae, I thought I would give them another try. I sure am glad I did! This company REALLY know how to make a big girl feel good about herself! Want to know what size I wear now? A 6!! They have a system they call RightFit. There are 3 different types depending on your body type...red is for straight people, yellow is for slightly curvy, and blue is fr extremely curvy. The sizes start at a 1!! Not only is the number great, but the fit is magnicent! I can't remember the last time I put on a pair of jeans that fit EVERY part of my body. Usually by the time I find some that fit my hips and thighs, the waist is ridiculous! I ended up buying 2 pairs, but will most likely buy a few more soon. They also have pants in this line. I also got a new sweater, a new shirt, and 2 new bras. AND, to top it all off, they gave me 20% off JUST for applying for a line of credit. You don't have to be approved...they give it to you just for applying! So of course, I did!

We haven't had a lot going on lately. Aidan has another ear infection. Same one that has been infected 3 other times since November. Chu thinks it is probably an allergy, so we have him on some new medicine. Rhae's nose won't stop running, so she is on allergy medicine now too. She doesn't seem bothered by her breaks, though she has found a way to manuever herself with the smallest amount of contact to the areas. We are due for a treatment Tuesday, so keep her in your prayers that everything goes as good as last time. We don't want to have more than one IV stick this time. Also pray that it stays in and the treatment goes well. She really seems to be feeling bad the last 2 days, so I am thinking she is starting to have some bone pain. Good news is, though, it has been longer than it usually is before she starts to hurt.

For those of you not from around here, our weather has been crazy the last few days. Friday we were under a tornado warning and had torrential rain and small hail. This morning, we woke up to snow. Unfortunately, Rhae had a horrible night, so by the time I woke up it was gone and I didn't get pictures. Of course, they wouldn't have compared to the pictures from last year's snow! Aidan was excited of course, but it really wasn't enough to play in. I did get to see it fall most of the early morning though (2:30 to 6:00), and that is what I like...otherwise I hate snow!

So that's about it for now. Just an FYI, we no longer allow Aidan to sleep in the bed...at least that is what you would think from the following pics:

Also, here is Rhae's new thing. Of course, the video is not that great because she freezes anytime a camera comes around and won't do what you want her to. But, I was lucky enough to catch a little clip of it! Now, I'm just trying to get her to do it when I say Roll Tide! She's also clapping her hands now! I'll have to try to get a video and add that later.

New post

2009-02-24T23:20:00.005-06:00

I seem to have been putting posting off for a while now and have had so much going on. I thought about breaking it up into a few posts over the next week, but honestly, I would probably never get back to it. Everything started a few weeks ago, when my right shoulder started hurting again. I had an injection 6 weeks ago and if I have one more, that is basically the recommended life time doses I should get (3 in a lifetime to prevent cartlidge damage). On top of that, Rhae started with a sinus infection and it will not go away. Thick drainage from her nose ALL the time and poor thing, now her nose is raw. She gave it to me for several days and I am starting to feel better. Don't know what I'll do for her, though. I have a pharmacy in my cabinet and nothing seems to be really helping. Don't suggest anything...I've already tried it!

Ok, so that all started the week of Valentines. On Valentine's Day, we took the kids to the McWane Science Center in Birmingham. What a great place! If you've never been, please plan a trip. If you don't have kids, kidnap some. We all had a great time. I'm thinking about having Aidan's birthday there. We drove up that morning, had lunch at my favorite deli, Newk's, then spent about 3 hours at McWane. When we left, we got almost to Tuscaloosa and realized it was getting late and we would have to eat out when we got home, so we might as well stop and eat something good. We decided on Tokyo, a japanese steakhouse. Waited an hour for a table and ate for two, but had a ball! It was Aidan's second time there and Jay's first. I was so proud of Aidan. After waiting for an hour and being hungry, I was worried he would act up at a table full of adults and not want to eat anything because "I don't like that.", but he was so well mannered, and not once did I have to correct him, ask him to sit down, anything! he was great! Now, I know most of you are wondering if I drugged him, but I promise I didn't! Not only that, but he actually tried EVERYTHING we asked him to! he ate the salad with ginger dressing and liked it. He tried a few bites of soup, but didn't like it. Ate a ton of rice, all his shrimp, and most of his vegetables, but again, tried them all! he even ate with chopsticks! He had so much fun! Below are some pics from the McWane Center.

Aidan and Jay sustaining hurricaine force winds!

Aidan being eaten by a giant bass (don't you know his Bo or Uncle Steve would love to catch that?)

Aidan and Jay predicting Katrina's path on their weather forcast! (Neatest thing I've ever seen!)

Aidan

A camera took a picture of Aidan's shadow and i took a picture of the shadow! Cool!

Rhae and the butterflies

Aidan and the giant piano

So this week started out bad and just kept on. Monday, I knocked the driver's side mirror off my car and have to replace the whole thing! I don't know how i did it...honestly! The rest of the week was a little of a blur, taking care of Rhae, etc, but not a fun week. Saturday morning, Rhae rolled out of our bed. Jay thinks she rolled around a pillow, but I think from where I found her, she rolled over it. she landed on the floor and didn't move. She never cried and it took her a while to catch her breath. Jay had gone to get Aidan some breakfast, so I called him freaking out and started getting dressed to go get her checked out. She really wasn't acting right. Got to the office and x-rays showed a broken forearm. They didn't show broken ribs, but I know she broke some. they watched her for a while, and she began to come around, kind of like she had just been shocked. So, we came home and she tried to roll around some but was obviously uncomfortable. She had a bottle later and took a nap. When she woke up, I noticed her forhead looked large, like she had had a haircut. I felt the top of her head and noticed the suture lines i normally felt could not be felt! her head was tight, and of course, nurse Momma freaked out! I called Chu (don't know why really--in hindsight, I think I was just freaking out) and we packed up and headed to Birmingham. Spent 3 hours in the ER there and found out everything was ok. CT showed nothing. Her x-rays actually showed several broken ribs and the arm was a little worse than we thought. So, of course since then, i haven't slept much. Every move she makes I am wide awake! Yes, she sleeps with me in the bed, but only because when she started rolling over, i was worried she might get her arms or legs caught between the metal rods of her mini-crib in my room if she rolled over and break something. we are planning to move her baby bed into my room so she can sleep in it, but just haven't done it yet. It has bumpers and i can tuck them down low so she can't get caught in the slats. Since then, she has done pretty well. today was her first day without Lortab and she did well. We also went for a follow up with her ortho in Birmingham and he said she looks good. He could believe how well she moved and that she was not as tender as he expected. i told him she just seems to be very resilient!

So, I guess that's about it. Sorry for the typos, but I'm just rushing through this so I can get to bed! Before I go, though, I just want to take a minute to talk about answered prayers! Since having Rhae, I have really been more in tune with answered prayers and noticing how even the little ones get answered! Not that these are small by any means, but here are the most recent specifics that I have been able to mark off my prayer list (actually not marked off, just a subject change)...

1. The Hurst's are off to China to pick up Hattie! Please continue praying for their safe return and that Hattie will adjust easily. Also pray for their other children, as their Ma and Da are away from them and also that they will adjust well to their new sister.

2. My friend, Christiane's little boy Tysen, is home from the hospital after being treated for pneumonia, and is recovering nicely. Also, his little sister did not get it! Yea!

3. Rhae is tolerating her pain well.

4. Many of you may remember me asking you to pray for Kira West several months ago. Well, after 4 months, she came home from the hospital today. Yes, she has been in the hospital since October and has been through so much, but this little bit is AMAZING and has a wonderful dedicated mother! Praise God!

5. My friend, Missy, had her baby today and had the easy and quick labor i have been praying for! She birthed a third son, Spencer Hayes Stroud, close to 5 hours after being induced. Mom, Dad, and baby are all doing well!

6. My friend, Cindy, is continuing to heal from back surgery. She had a small set back last week, but is doing as well as expected.

7. I'm feeling a lot of changes in my life, so for those of you who have prayed for this, know your prayers are being answered as well, but keep praying! I need a lot of it right now.

Momma school

2009-02-11T22:28:00.002-06:00

Aidan asked me last night how I knew how to be a momma. I told him I didn't, I just do the best I can. Quickly, he retorted, "Well, why don't you go to Momma school?" I laughed and asked him, "What?" He told me that I should go to Momma school and they could teach me all the things I need to know about being a Momma. So yes, I took the bait...

"Is there something you think I need to learn about being a Momma?"

Aidan: Purses lips and nods quickly several times.

"Like what?"

"Well, like with her (points to Rhae)." Now I'm REAL interested.

"What?"

"Like going places. You need to take her for a walk. And take her to more places she wants to go, not always where you want to go."

"Like where?"

"You know...like when you HAVE to go to Wal-Mart and take her with you, you should take her to the toy section and buy her something she wants to play with." (All this after 2 days of discussing why we don't just run to Wal-Mart to buy toys whenever he wants.) "And it shouldn't bother you how she looks."

"Aidan, it doesn't bother me at all how Rhae looks!"

"Yes it does. You're always putting bows in her hair and making sure her hair is combed. And sometimes you make her wear her shoes even though she doesn't like them."

Out of the mouth of babes, as they say. I guess if you really don't what to know, maybe you shouldn't ask! You never know what answers you might get! :)

Good news

2009-02-11T22:11:00.003-06:00

Well, for what feels like the first time in a while, I got some good news today. Many of you may know that I have been struggling with the decision whether or not to take Rhae to Omaha to the OI clinic. We will still get her PAM in Birmingham and see her ortho in Birmingham for checkups, but I just don't feel like I am doing all I should be for her. I worry that I'm missing something we should be doing and unfortunately, I don't believe our doctors know any more than I do. For the last several months I have prayed for God to help with my decision. I keep saying I haven't gotten a clear answer one way or the other, but last night, for some reason one of the times I woke up to feed Rhae, I looked down at her and it hit me like a ton of bricks...we MUST go to Omaha. Last week, I got an email from another OI mom who has become a great friend and support (love you!) who mentioned that when they saw Dr. Esposito, the ortho, last, he mentioned that her daughter will have the same obstacle to walking that Rhae will, and they would do rods sooner than later to prevent fractures. Since she mentioned that, it has really started to sink in with me that I think they will do a lot more for Rhae than the doctors around here. When I have questioned the 3 orthos we have seen here about rodding, they have all said, we'll just have to wait and see.

Well, they have this great clinic in Omaha, where you can see everyone in one day...ortho, endocrinologist, dietician, PT, OT, the works. They are all willing to work in conjunction with your local physicians as well. So today, I called my insurance company to see if they would be covered as "in network" under our policy, and THEY ARE! I was thrilled! Now, I've just got to start checking around with airlines and see who might offer medical discounts and who is cheapest. I also need to get her scheduled in one of the clinics. I'm hoping to go the same time as some of the other kids we know, and hope to be there with Christiane and Trinity, but I worry their next appointment may be at the same time our PAM is due, so not sure how I'll handle that. Either way, we are going to Omaha sometime! I know I owe it to my daughter to do all I can for her, and I feel like I'm taking a big step that way. Our tax refund should be here soon, so I'll put some of that back to help with the trip.

Other good news...our friends, the Hursts', definitely leave for China to pick up their daughter in 13 days! We are so excited for them and can't wait for Hattie Lou to be home! Please keep them in your prayers as they fly out on the 24th, and then again back home on March 13th. Pray they have safe flights and that Hattie Lou quickly adjusts to her new surroundings. She has an awesome set of parents and siblings to come home to, as well as a town full of people waiting to meet her! It's been a long-time in the making and I am so happy that God is finally bringing this little girl home!

Our God is an awesome God!

GI Jane

2009-01-30T14:03:00.003-06:00

Just wanted to share our little crawler with everyone! She still rolls to wherever she wants to go, but if there is something close by that she wants, she will crawl to get it. I think it wears her out a little, but she loves her newfound idependence!

I can't believe it!

2009-01-23T21:54:00.003-06:00

As I sit here half working and half internet browsing, I can't believe what I have just seen. Rhae has been rolling like crazy for the last few weeks and has gotten really good, rolling all over the den. Well, apparently, she is not going to be outdone by her cousin Halle, because Rhae too is now trying to crawl. Well, not trying, and not really crawling. She has the soldier crawl DOWN PAT! She's been moving her legs around a little when on her tummy, but not really going much of anywhere. Well, she was on her stomach and saw something several arm lengths ahead of her. She apparently figured out she could propel herself, because she went from side to side, each time pushing just a little with the opposite leg until she got what she wanted! I do think she will crawl before her birthday! She is just such a determined little soul and it is absolutely amazing to see how far she has come and the accomplishments she is continually reaching!

Oh--and by the way, if anybody reads this before tomorrow, or in the next day or so, there will be an article about Rhae in the weekend Demopolis Times. Not sure how it will look, but Amanda called me about a month ago to ask about them doing a story, and after busy schedules, we finally nailed down Wednesday and David Snow came over to do the interview. I, of all people, almost became speechless, and felt like I couldn't think of anything about OI. I hope it is informative about the disease and not just us, because that is the only reason I agreed to the article--to educate the public. So, check it out if you get a chance. I hope to be putting some new pics on when i get a chance.

Rollie Pollie

2009-01-05T23:54:00.004-06:00

Well, I am now officially the mother of a rollie pollie! Rhae has been rolling from her stomach to her back, and has now mastered from back to stomach. As I figured she would, now that she has discovered this mode of locomotion, she is testing it out by going all over the den! Jay and I sat and watched her the other night go from back to stomach to back to stomach to back to...well, you get the picture! I know this may not seem like a lot to many people, but it is a MAJOR milestone for us! I can just sit and watch her roll and roll and roll while I cry and cry and cry! I got so tickled at her this afternoon--I laid her in the den on her blanket and went about my business getting some things done. A few minutes later when I checked on her, she had rolled off the blanket towards the TV. So I went on into the kitchen to wash bottles and call my mother-in-law, and a few minutes later, I turned around to go check on her and she was laying in the doorway! I started laughing so hard that I could barely catch my breath! My little rollie pollie!

I had hoped that one day I would see my baby be able to roll like she is doing, but I honestly didn't know that it would be before she was 9 months old! This gives me so much hope for the future--knowing there is a probability I will see her sit up alone, maybe sooner than expected, and hopefully see her walk one day. Rhae has come such a long way and I am just so thankful each and every day that she is here with us! I know everyone is proud of their children, and I'm not trying to say that I love my child any more than anyone else loves their's, but I promise, until you've had a child who defies all odds and just keeps going, I don't think you can truly appreciate all life has to offer. I told my stepmother just the other day, as much as I dreaded OI while I was pregnant, I wouldn't take anything in the world for it now. OI is my life, and I wouldn't have it any other way. Of course, I would get rid of it in a heartbeat to get rid of Rhae's pain, but that would be the only reason. OI is part of what makes Rhae who she is, and she wouldn't be Rhae without it! OI has changed me in so many ways, all for the better--it has taught me so much. I've said it before, and I'll say it again...take nothing for granted, especially your children! Slow down and pay attention. Get excited about the little things. You'll be surprised at the difference it will make in your life.

P.S. Incase I don't post again before Sunday, our friend, Jake Grys, who also has OI, and his family were the lucky recepients of a new house courtesy of Extreme Makeover: Home Edition in November. They live in Illinois and their story will air this Sunday night on ABC at 7pm, CST. Don't forget to watch precious little Jake get the house of his dreams!

Hymns

2009-01-03T23:51:00.004-06:00

Have you ever really thought about the words to hymns or do you just sing them at church? I have to admit, while I think I know the words to most standard old hymns, I don't always think about what the words are really saying. Now, you may ask, what in the world has brought this subject up? Well, years ago, my Daddy passed on the passion for music, and in that I must admit, is the love of good gospel music. I'm talking that real country gospel. Well, since my normal SNL got a late start tonight, I had to find SOMETHING to watch (or really to listen to) while I got some work done. Lo and behold, GAC has a gospel special on from the Grand Ole Opry (where else?) and it is amazing. If you like music, regardless of whether you like gospel, if you ever get a chance to see it, it's called How Great Thou Art. If you like music, there's no way you could be disappointed--this coming from someone who is not crazy about country music. Anyway, as I sit here patiently waiting for someone to sing my favorite hymn, which happens to be "In the Garden," I have cried my eyes out listening to Brad Paisley sing "The Old Rugged Cross." Talk about a hymn. I have never really heard it like I did tonight.

On a hill far away stood an old rugged cross,
the emblem of suffering and shame;
and I love that old cross where the dearest and best
for a world of lost sinners was slain.

So I'll cherish the old rugged cross,
till my trophies at last I lay down;
I will cling to the old rugged cross,
and exchange it some day for a crown.

O that old rugged cross, so despised by the world,
has a wondrous attraction for me;
for the dear Lamb of God left his glory above
to bear it to dark Calvary.

So I'll cherish the old rugged cross,
till my trophies at last I lay down;
I will cling to the old rugged cross,
and exchange it some day for a crown.

In that old rugged cross, stained with blood so divine,
a wondrous beauty I see,
for 'twas on that old cross Jesus suffered and died,
to pardon and sanctify me.

So I'll cherish the old rugged cross,
till my trophies at last I lay down;
I will cling to the old rugged cross,
and exchange it some day for a crown.

To that old rugged cross I will ever be true,
its shame and reproach gladly bear;
then he'll call me some day to my home far away,
where his glory forever I'll share.

So I'll cherish the old rugged cross,
till my trophies at last I lay down;
I will cling to the old rugged cross,
and exchange it some day for a crown.

Well, it's over

2008-12-26T01:20:00.005-06:00

Christmas is over, and honestly, I don't know whether to be happy or sad. Christmas is my absolute favorite time of the year, but it seems it gets harder and harder to enjoy every year. Maybe it has something to do with being responsible for meals and kids...you know, all the stuff we didn't have to worry about years ago, when we could stay out all night drinking and having fun, then show up at Grandma's house the next day for food prepared by someone who didn't stay out all night and didn't need Tylenol to start the day. Funny thing is, I don't miss those days all that much and wouldn't trade my life for that now. We had such a great day today. Aidan and Rhae woke up to a HUGE spread from Santa. Aidan got so excited about opening his presents from us that he could hardly finish. He would open something and want to play with it, oblivious to the fact he had more to open! It was so much fun. Rhae got some really nice toys and is trying to figure out what to do with most of them! After everything was opened and thoroughly inspected this morning, Aidan informed me this was definitely the best Christmas ever!! Oh, to be young again! I got so caught up in handing out presents and helping Rhae open hers that I only got a few pictures--shame on me! Some of the cutest I got though, are of my neice, Halle. She sat in front of her presents and once Mandy would get her started she would go to town getting into her present! She had so much fun opening them...she looked like an old pro. I tell you, I really do think our babies got crossed somehow! Not only does Halle love presents like her Aunt Dana, but she is also not very girly, like her Aunt Dana and not at all like her girly-girl of a cousin, Rhae. Halle also loves to eat like me and Rhae could care less! :)

We had our Busby Christmas at Rhonda's on Christmas Eve, as we do every year. We had a delicous meal and just enjoyed all being together. Allie couldn't join us, but Rich got her today and was able to have Christmas with her. We'll see her tomorrow to give her her present and I can't wait! We got her an Easy Bake Oven, and I hope she loves it as much as I did when I was a little girl...I wonder if that's when my love for cooking started? Afterwards, we headed over to the Wilson's for their annual Christmas party. We got to see so many people and I had a really good time, other than just being nervous walking around with Rhae. There were SO many people there, and I get very nervous when I am in a crowd with her. I got to see My Charlie and for some reason, it didn't really hit me until this year how grown up he is now. In my mind, he should still only be about 17 or 18!! He's grown into such a fine young man, just like his daddy, and even gives the, "hey baby!" greeting so familiar to those of you who know Dan!

The Clem's came to our house for Christmas morning as we have for the last 5 years. This tradition started many years ago, when we would all go to Jennifer and Molly's to see what Santa had left for Molly. After this, we would head down to Granny and Happy's for our gift swapping and then head over to the Dinning's for breakfast. Well, when Aidan finally got to where he could understand the whole Santa thing, everyone started coming over here to see the Santa stash, and eventually, we began having breakfast here. I really enjoy having everyone here and don't know what we are going to do from now on since we now have two houses that get visits from Santa! We had a good time, but it still wasn't any easier this year without Granny. I had my breakdown that had been building up late Wednesday afternoon, and if I hadn't I don't think I could have made it through the morning. Christmas is such a special time in our family, and it still just doesn't feel right without her.

Halle

I love her smile!!

Hmmmmm...

Yea!! An Alabama cheerleader!

Rhae

Aidan

Bo, Nana, and their babies

We all headed over to Mandy and Darrin's for a BIG Christmas lunch with the Howell's, Milling's, Clem's, Busby's, and Hynniman's. We had a great time and a wonderful lunch. Thanks to Mandy and Darrin for hosting the large crowd. Afterwards, we came home and all passed out for a little while. Later that night, I found my new addiction in Guitar Hero III. I am the most rockin' person in my house right now!! Michael and Susan came over for a little while, sans Hunter, and we enjoyed catching up.

So, that was our day. Loads of fun, tons of new stuff, and over way too quick. This is a sad time, because I know I only have a week left to look at my decorations. I love Santas, and i love my tree and our stockings and I wish I could leave them up year round. I've actually thought about it with my tree. I had a nurse manager once who left her tree up year round and decorated it with seasonal things. Sounds strange, but it was really pretty. Oh well, maybe next year.

My tree

My mantle with my Santas and stockings

No time!

2008-12-20T22:31:00.012-06:00

I really do try to find time to keep this blog updated, but it just seems I have no time. I think there is a Black Hole out there that somehow sucks time out of a parent's day. So, I have a lot to catch up on, it's been a busy month. I know my posts can get really long sometimes, so if you don't like them, stop here because this will probably be a doozy! Ok, so here we go...

Our December started off like every other one for so many years...CHRISTMAS ON THE RIVER! I remember how excited I was to take Aidan for his first COTR parade, but this year definitely trumped that because not only did I get to see Aidan enjoy another parade, I also got to watch Halle at her first parade and Rhae at her second, though it was more like her first, because the Homecoming parade isn't anything compared to this! Let me just say, if you've never experienced a COTR weekend, you should definitely fit it in your schedule next year! We bundled up Saturday morning and headed over to the Rogers' house as we have for the past 5 years. They are such gracious hosts, always providing a loving envioronment, great food, and an awesome spot for watching the parade. Below are some pictures from the day.

I'm so ready!

Halle seemed a little unsure, but sure did enjoy herself once the parade started.

It's almost time!

Next came Rhae's appointment with our new orthopaedic doctor. We have seen 2 orthos at Children's and I just haven't been pleased. Truth be known, I was pretty downright disgusted! The first doctor was nice but seemed a little inexperienced and I was just a little put off by him. Next came the doctor we saw with Aidan and really liked, but when it came to this...NO! Rhae was 5 months old when we saw him and he acted like we shouldn't know anything about OI, found it strange that we weren't carrying her on a pillow or board, became a little testy when I began questioning him, and then tried to get us to go to South Carolina to the Shriner's Hospital there where he just raved about how good their OI care is. Well, the parent's who are on are web group that have been there say they are no good at all. I was really starting to feel defeated and thinking we might as well suck it up and get to either Omaha or Montreal. I decided to schedule an appointment with one more doctor who I had always heard good things about as a last ditch effort. The day I scheduled our appointment, his nurse practitioner talked on the phone with me for 45 minutes. I was impressed not only with her spending that much time talking to me, but also with the way she was answering my questions. I also like the fact that there is an NP there. So, we saw Dr. Killian on the 9th and I am VERY pleased. I knew that when I found the right doctor I would know (like I have with the others) and I was right. He had a wonderfully nice staff, we didn't wait too long (not that it would have mattered), and dr. Killian spent a good bit of time in the room with us, regardless of the fact that it was lunchtime! I didn't feel like he was rushing our visit, I didn't feel like he thought I was an idiot and shouldn't know about my daughter's condition, and he actually examined Rhae. The first one didn't touch her, the second one lifted her dress and looked at her chest, but Dr. Killian requested we strip her to her diaper, and then he felt every part of her body. It was neat watching him. You could see everything he touched, he did with a little pressure to see if she responded, and then proceeded to FEEL the shape of her bones, not just depend on x-rays. He asked about her head control, then sat her up and held her to see how it was. He talked about several different things concerning OI, told us he felt like she would walk eventually, though her biggest obstacle would be the right tibia and fibula bowing. We talking about splinting and surgery, and he compared her xrays from birth with the most recent ones, pointing out several things. I know he really took us seriously and wants to help us. I'm so happy. And of course, as anywhere else we go, everybody fell in love with Rhae...not only because she is so absolutely beautiful, but because she also has the personality to match.

Later that week, we had Aidan's "friend" birthday party. We have a LARGE family, and decided this year, we would let Aidan have 2 parties...one for friends only and the other for family. It worked out REAL well, as there are about 28 members of our family. We had his 1st party at Batter Up, a local sports eatery. We had all the boys come in their favorite sports jersey, and I am proud to say, that Alabama beat Auburn yet again! Aidan had a football cake that was yummy and the boys ate chicken fingers and fries and had a ball just being boys.

Aidan and Jacob

This is pretty much how Aidan looked the whole night!

Aidan blows out his candles as Harris, Jim, and Luke look on.

Jim and Luke's adorable little brother, Ben.

We had Aidan's "family" party at the house on Tuesday night, his real birthday. I can't believe my baby is 6 years old!! After getting Aidan off to school that morning, I patted out 34 hamburger patties and made a cake. Aidan wanted a baseball cake and I think I did pretty good. Those of you who know me know that I'm a fairly good cook, but i'm no baker. However, everyone assured me the cake was delicious, and I thought it was pretty good too, considering I made it! Aidan loved how it looked and I was excited that I was able to pull through and make what he wanted. We had most of the family here that night along with some "should be family members" and Aidan got a lot of nice things. He was very happy, as the pictures below show.

The cake! (not bad, huh?)

You know, somebody really should tell me how bad I look before they take my picture!

(Thanks, Beck Beck)

Ever notice how you can always count on a Wilson for guaranteed fun? :)

Ok, so I told you this was going to get lengthy, and I figure if you're still here, you MUST love us! So, to reward you, here are some pictures that I LOVE! The first three are some we took while trying to find that "just right" picture for our Christmas card (is there really such a thing?). The next is a picture of Rhae sitting solo for the first time. Granted, it's not by herself, but she was happy (as you can see) to do it with no one attached to her! Thanks to cousin Halle for letting us borrow her Bumbo. Rhae was able to tolerate it for 14 minutes, which is much more than I expected...she's just so determined! The last two pictures I took last night and love them. Every year, MiMi has sent Aidan a Christmas-themed stuffed animal before Christmas. This year, he got a cute ice skating reindeer (which he loves!) that is as big as Rhae, and Rhae got a little reindeer holding a baby reindeer, and it's not much smaller than she is! :) Rhae also has on her Santa Claus jammies that MiMi sent her. The last one...well, I just love the look my children get on their faces when they are together. And if my pictures aren't proof enough of the power of sibling love, then I've included some videos! It amazes me that Rhae knows Aidan is her brother as young as she is. Isn't it neat how siblings know one another? I often look at them and wonder if Mandy and I were like that when we were little (I know I feel that way about her now).

I'm still not sure what exactly is so funny about this!

The sweetest raspberries are not ALWAYS a fruit!

Merry Christmas!!

It's the most wonderful time of the year

2008-12-14T18:58:00.000-06:00

Sorry it has been so long since my last post. Can you believe Christmas is almost here? This is absolutely my favorite time of the year, not only for the meaning behind Christmas, but also because everything is always so beautiful at Christmas. I wish I could leave my tree up all year long! This year I have so much more to be happy about here at Christmastime.

Today has been sort of a bittersweet day for me. I looked at the clock this morning at 2:15 and realized it was December 14th. Exactly one year ago today, we got our first indication that something was wrong with our baby. She didn't even have a name yet, though we had thrown some around. I had not been feeling good for 2 days, and finally, at 4:30 that Friday afternoon, I called the doctor to let him know I was having some contractions and just didn't feel good in general, but I didn't want to go to Labor and Delivery to be monitored--basically I was only worried because it was 4:30 on Friday afternoon. He told me to go to the office to get checked out. I had an ultrasound that afternoon, though my complaints didn't normally warrant one. The technician noted that the baby's legs were measuring about 6 weeks behind what they should. I was devasted. I really didn't know how to process what I had been told. I came home and went to bed, as they wanted me on bed rest for the weekend. Aidan's birthday party was the next day, and Dr. Chu called me on my cell phone during the party to tell me he had looked at the US and there was indeed a big difference and he would get me an appointment in Birmingham for the next week. I told a few people that day what we had been told, but not everybody. We wouldn't find out for sure that anything was wrong until the 19th, though, when I had my targeted US in Birmingham. Jennifer and I went up that day and the possibility of OI was mentioned, but I think in my heart, I knew that's what it was. I felt like my world was crashing down around me. The night before, Jay and I had decided on the name Martha Rhae. I wanted my baby to have an identity if I found out something bad the next day. We had thrown around several names, but finally decided that no matter what happened, she needed a very special name. Martha was my wonderful grandmother's name who passed away in May 2007. I couldn't think of any other name that meant more to me than that. Rhae is after Jay's daddy, who died before Jay was born. His middle name was Ray, so we feminized the spelling and went with that. Now, all of a sudden my child had what I thought was the most beautiful name in the world. It had meaning and substenance, and having a name made her more real to me. Little did I know that giving her the name Martha would lead to her ultimate overall wellbeing and personality (for those of you who knew Granny, Rhae is SO much like her!) Everybody pretty much knows the rest of the story from there, but today will always be...I don't know what to call it...not bad or sad, or happy, but just a day that changed my life forever. You never expect to hear anything is wrong with YOUR child...that happens to other people. But, I am now that other person. Decemeber 14th is the day I got the worse news of my life, but also the day my life took on new meaning. The day I was humbled. The day my precious Martha Rhae began her testimony.

I know I have a lot of catch up posting to do, and I will when I get time. I need to post some pics from Christmas on the River and from Aidan's "friend" birthday party Friday night. My baby is going to be 6 years old on Tuesday--where does the time go???

I also want to take this time to say a very special thank you to someone. I received a Christmas card in the mail yesterday with no return address and no name signed on the inside. I only know 2 things about who sent it...(1) They are good, Christian people, and (2) they read my blog. Since I have no other way of telling you, I'll tell you here...Thank you! Your heartwarming card brought me to tears (and has everytime I have read it, which is many), and means so much to me. I don't even know if I know you, but you have definitely put a bright spot in my heart. Thank you.

Peek-a-boo!

2008-11-18T15:57:00.000-06:00

So, not only is Rhae raising up on her chest, she has a new game as well. It's SO funny!

We're home!

2008-11-17T21:21:00.000-06:00

For those of you who didn't know, we've been in the hospital since Thursday. Rhae has had diarrhea and got dehydrated. Thank goodness though, she has been as happy as usual. I, on the other hand after spending 4 nights in the hospital, am exhausted and honery! We're not sure if it's a stomach virus or something else. The cultures should be back in a day or two, and hopefully we'll know more then. She did enjoy a visit from Halle while there. Thanks for stopping by, Hal!

Rhae did something exciting while we were in the hospital, though! She has begun to push up on her arms, raising her head and her chest! She really seems to like being able to look around. I'll post a video later.

I really don't have muh else to talk about now. Just so tired. I'll post again soon.

Bazaar Day!

2008-11-12T21:51:00.000-06:00

Wow~I'm SOOOO exhausted! Today was the Bazaar at church and I was in charge of the silent auction this year. For those of you not familiar with the Bazaar, it is a yearly event held at our church put on by the United Methodist Women. It is our big fundraiser for the year. All members pitch in throughout the year and on this day, and we have a home accents room, an attic treasures room, a bake room, the silent auction, and our famous pimento cheese and chicken salad lunch. It is always a very fun, successful day, and people come from all over to enjoy the fun, fellowship, and shopping. When I left tonight, after 9.5 hours, we had already made over $18,000!! All of that is donated to various missions and ministries. Vickie Wilson and Jane Wallace co-chaired this year and did a wonderful job! I also have to give a HUGE thank you to my sister, Mandy, who helped me the last week calling people and getting donations. Thanks to anyone who reads this who gave us a donation! The silent auction made $2569.75 this year; not as much as usual, but not bad for the economic situation. Rhae stayed there with me ALL day today and was SO good! Of course, everyone admired her and she smiled at everybody, talked to several, and just watched everything going on. Mrs. Jane even helped me yesterday with a new way to deal with this whole "da-da" thing (see a few posts back). She's convinced that Rhae hears me saying daddy when I'm talking to my daddy so she must be copying me and when calling "da-da," rather than calling Jay, is in actuality calling her Bo. He was there when this was mentioned and says he concurs. I think I'm ok with that. :)

On another note, I don't know if I'm just exhausted after 6 hours of sleep in 48 hours, or if this is really as funny as I think it is, but somehow, I stumbled across this website and I think it is hilarious! If you don't like silly humor, don't waste your time, but if you're like me, you're guaranteed to laugh! Especially check out "Nijalympics" and "Ninja Bookclub." Hilarious!

http://www.askaninja.com/

Hunter Bowen Howell

2008-11-11T23:13:00.000-06:00

I don't really have anything to talk about today, but as promised, wanted to post pictures of my beautiful new cousin (?). I don't really know what to call him...I guess cousin will do...he is the son of my 1st cousin, Michael. Honestly, he feels more like a nephew, as me, Michael, Mandy, and Whit have always been so close. Anyway, here he is...and don't think I'm prejudiced to just us--the only picture I have of him and his Momma is with her head turned. I will get a picture of her beautiful self up eventually! (love you Susan!)

As you can see, he is being rasied right! Roll Tide, Hunter!

The Howell men--daddy Michael, brother Duke, Hunter, granddaddy Randy (don't know what he'll call him), and the best uncle in the world, Whit

Hunter and Daddy--can you see the resemblence?

Hunter and K.K. (at least that's what Aidan calls her)

Just want to share this...

2008-11-10T22:33:00.000-06:00

As most of you know, Jay and I decided it would be best for me to stay at home with Rhae after she was born. I am fortunate enough to have a wonderful friend who helped me figure out a way to do this by giving me a job I can do from home. It helps a little, but is by no means anywhere close to what I was bringing home before. Things have been very stressful and financially tight here, and I often find myself worrying how we will continue, positive that our last dime has just gone for something. Yet, somehow, 7 months later, God is still providing for us and we are making it. I don't know how, but we are. I remember when I was making the decision whether or not to quit my job, a friend in a similar situation told me of her experience. God led her back to work, and though she could not figure out where the money came from to pay someone to care for her child in her home, it was always there. It sounded so weird, but I can honestly say I now understand. I don't often know how the bills get paid or where the grocery money mysteriously appears from, but it always does.

Well, today, one of the most amazing things ever happened to me. I don't intend to go into detail, but just want to relay, as I have so many times, just how good God is and how He continues to take care of His flock. Out of God strategically placing people in the right place at the right time (something that would only seem strangely coincidental to some), we have had a huge burden lifted today. Praise God! Simply another answered prayer. I'm telling y'all, I have been so immensely blessed, I really do wonder when I will reach my cut-off! :)

I have always been a believer and a follower. For reasons unknown to me, I went astray for a while. Not that I ever stopped believing or following, I just stopped partaking and abiding for a while...while everyone else went back to the barn, I just sort of moseyed in the pasture a little longer. I always knew where I should be and just didn't do anything about it. I haven't told many people this, mostly out of shame, but I am finding more and more I want to share it with others so that I can tell them not only is my daughter a miracle in the fact that she defied all odds and lived, but that she has served her Savior already in so many ways and doesn't even realize it! She alone, a baby not even born yet, brought me back into my flock where I should have always been. She alone, both before birth and since, has changed many dynamics in my family, breaking down walls that were slowly built up. She alone has shown the love and beauty of God to so many people just by being Rhae...beautiful, happy, loving Rhae with an unbreakable spirit. I feel so blessed that God has allowed me to be her mother and that He has welcomed me back with open arms, providing for me as all good Fathers do.

Halloween pictures

2008-11-07T15:32:00.000-06:00

Bo, Nana, Aidan, and Rhae

Aidan and Rhae

Wolverine

Have you ever seen a cuter ladybug?

Little Miss Ladybug

Where has the time gone?

2008-11-06T21:39:00.000-06:00

Wow! I didn't realize how long it had been since I posted anything! I did so well there for a while! For those of you who have been reading my thoughts, once again, I'm trying somewhere new. For those of you that haven't, I have posted my older rants here as well.
Ok, to start, many of you already know, but for those of you who keep up with us through blog only, our little friend, Mary Clayton Fancher, went to live with God on Sunday, October 26, 2008. She fought a long, hard fight, and didn't give up easily. That is essentially the spirit of OI! She touched so many lives (including mine) in her short time on this earth, and many people are forever changed by her presence, especially her mother and father. This child left behind an amazing family who I feel privileged to know. Her mother, Stephanie, and I seemed to bond immediately. I don't know if it was because of the OI diagnosis in both our children, or just because, but I feel we will always have a connection. I am so appreciative that the Fancher's included me in such a personal situation. Rhae and I went to the funeral, which was beautiful, and I was very nervous about going because I was taking Rhae (only after stephanie and Robert assured me they were ok with it). Normally, I don't care what other people think about me, but on this day I was very concerned that people would see me and think I was heartless for bringing a baby to a baby's funeral. When I finally got the courage up to get out of the car, Stephanie's mother, Beverly, soon approached me and I began to feel a little less nervous about the situation. She walked us into the church and began to introduce us to other family members and friends. It seemed everyone knew who we were, and no one seemed to think anything of us being there. I have to say, I have never felt so comfortable and accepted with people I was meeting for the first time. I know many of you keep up with us here, and I just want to tell each of you thank you so much for welcoming Rhae and I into your lives. I loved meeting each of you, though the circumstances were not ideal. For those of you who prayed for Mary Clayton's healing and for her family, thank you. Mary Clayton has had the ultimate healing, and is now able to run and play and breathe all on her own! What a wonderful thing to be with our Healer!

So now, to update everyone on Rhae. Much to the disdain of her mother, she has began calling her Da-Da. I know that all baby's do this because the "da" syllable is easier to get out than "ma," but it really is sad when it starts! And much like her cousin Halle, Rhae also laughs at me when I stand in front of her like a fool saying, "Ma-Ma-ma-ma." She has the most precious voice and sweet smile.

Halloween was quite an experience! Aidan decided he wanted to be Wolverine from X-Men. I think it was mostly for the claws! However, when he got all dressed up, we tried to explain to him he needed to make mean faces for his pictures, but all he could do was smile! Wolverine looks real unnatural with a smile on his face! I originally ordered the most precious kimono costume for Rhae but when it came in, it swallowed her whole, even though it was a newborn. I couldn't find anything for her that would fit and decided to put her in her orange pumpkin onesie for the night. Well, about 2:00 Friday afternoon, it was killing me to think I couldn't dress her up on her first Halloween, so I went to Wal-mart to scour over left over costumes, deciding I would throw together SOMETHING, even if it was last minute! Well, to my surprise, I found the cutest ladybug costume. Now, granted, it was made for a dog, but I swear, you couldn't tell! It was adorable on her and actually fit!! I will post pictures later. We had a great time, getting out and trick or treating our family and a few close friends. Rhae had no clue what was going on, only that she really didn't like that thing on her head!

Rhae still has not rolled over and stopped trying about a week and a half ago. I think it had a lot to do with bone pain. She was due for a treatment, which we had yesterday. It was her 4th treatment, and a little different than usual. We have gotten the other 3 treatments in the hospital, and just continued to be uncomfortable because it seemed we were always there at least 10 hours (for a 4 hour procedure), we were never on the same floor, so each time we had to start all over, explaining to staff they couldn't pick her up, pull on her, take blood pressures, or use tourniquets for IV starts and blood draws. I know it doesn't sound like a big deal, but honestly, Jay and I felt we couldn't relax at all because anytime anyone walked into the room, we automatically had to jump up to make sure no one took a blood pressure, moved her the wrong way, whatever. Also, each time we have been admitted, we have been charged a $250 co-pay, which begins to add up with office co-pays, meds, etc, when you are down to one income! So this time, we opted to have her treatment done in the outpatient infusion clinic--same nurses everytime, $30 co-pay, and hopefully quicker. Well, after we got used to being in the closet-sized room, we settled in nicely. Unfortunately, we had a problem with IVs blowing and one coming out, so we ended up getting stuck 4 times! I remember at one point tearing up (like I am now) listening to her cry again and again and thinking about how my emotional pain seemed to be as bad as the physical pain she was enduring and that she often endures. It is just so unfair that a 7 month old has to take so much. But, I know that it is what's best for her and is improving her quality of life, and that is the only reason I am able to continue. After the final IV was started, though, things went very smoothly, and we were only there 6 1/2 hours. The two nurses there were so sweet and caring. It is nice to know that in 8 more weeks, when we go back, they will have seen us before and though they might not remember us just yet, they will understand our limitations with Rhae's disease and we will not have to be so on edge during the whole treatment. It was nice to be able to feel relaxed this time! I even left the room once or twice, which I have NEVER done before! Well, after that, we went for our 2nd bone scan, and the first since starting treatments. After that, we saw our endocrinologist who we really adore. She called today with the results of the bone scan and I was a little disheartened. She said there was no real difference in Rhae's bone density since we began, and I was really hoping to see some change. I have to remind myself, though, that even though it may not show on the scan, I know it is doing her some good and that she would not be where she is today without it! She is just so amazing, I can't even put it into words! She's truly my hero! So anyway, I'm hoping over the next few days once the PAM begins to get back into her system, she will finally roll over. I think I'm ready for it...still scared, but letting her do her thing!

Last, but certainly not least, we have a new family member! My cousin, Michael, and his wife, Susan, had there first child, and Randy and Kaye's first "real" grandbaby Tuesday night. Hunter Bowen Howell was born 11/4/08 somewhere around 7:15p.m. (never found out the official time). Poor Susan worked very hard ALL day to get him here, and "little" Hunter could official start at linebacker, weighing in at 9# 9 ounces! (only 15 ounces shy of Rhae's current weight of 10# 8 ounces) Didn't get the official length either, but he looks at least 22" (surpassing Rhae's puny 20 3/4") and has hands that could easily palm a basketball! He's beautiful and I can't wait to spend some time with him and his Momma and Daddy! Congrats you two! We love all THREE of you!!

Well, I think that about gets everything caught up. It's sure enough to read for now, anyway. If there's anything else to add, I 'll do it later! Thanks to everyone who has continued to keep up with us and pray for us...keep up the good work, because prayer is what has gotten us this far!

Take nothing for granted

2008-10-23T21:37:00.000-05:00

I'm sure my sister will have something to say again about my entry not being about something fun and happy (I love you anyway!), but I have found this is a good way for me to express some of my feelings because I normally don't talk about things that bother me. But just to keep Mae Mae happy, Rhae is SO close to rolling over, and I can't wait for it to happen and be able to share it through video with all of you. Unfortunately, Rhae has run a fever for the last 24 hours and really is not feeling good even when the fever breaks, so there's not much other fun happy stuff going on right now.
Many of you already know of my struggle over the last few days. I mentioned in an earlier post about the adorable Fancher family we met. Mary Clayton has done so well over the last few weeks. Her mom has been email me daily and telling me of the progress she was making. It was slow, but still progress, and it thrilled me. Well, Tuesday morning, I woke up to an email stating she was not doing good. That night, I got another email again talking of how she had taken a turn for the worst and they were not expecting much. I cried all night. I am amazed at how quickly I have become attached to this baby and her parents. I'm usually very skeptical of new people and don't always connect right away. Strangely, that has not been the situation with Robert and Stephanie. I felt an immediate connection and I guess that's why this is so hard. I have taken care of very, very sick children in my nursing career, and have actually had to watch a 4 year old with brain cancer die after coding her for 4 hours, and have also watched a 9 month old baby boy code and die. As a nurse, I am supposed to be able to handle these things. This situation has really hit too close to home though. Though our situations are totally different ( I can't imagine what they are going through), I remember thinking Rhae wasn't going to live after birth. I remember thinking if she did, we would be in the same situation the Fancher's are. That could have been us, and that makes it a little more real.
I look at both my children and realize how lucky I am they are both here, and how I have taken their health for granted. Aidan is not sick much, and I don't think too much about how easy it would be for him to be as sick as some of the children I have taken care of. Rhae is doing great, and sometimes I forget how fragile and delicate she is, because she tries so hard. I know I have taken for granted the fact that she is here and we could be so much worse off than we are. PLEASE take a minute to reflect on your own children, neices, nephews, any children in your life, and how lucky you are to have them in your life. Things can change dramatically in a blink of an eye. Please keep Mary Clayton, Robert, and Stephanie in your daily prayers. We serve an amazing God. He hears our cries and still performs miracles everyday, and that is exactly what this family needs right now.

31 things you may not know about Rhae

2008-10-20T21:36:00.000-05:00

1. Rhae loves her mommy!
2. Rhae loves hands and ceiling fans.
3. Rhae is mesmerized by her big brother.
4. Rhae is a fighter.
5. Rhae loves any song with the syllables La-la in it, i.e. Minnie Ripperton’s “Loving You”
and Elmo’s theme song.
6. Rhae moves constantly.
7. Rhae will fight sleep for 3 hours straight.
8. Rhae is trying hard to roll over.
9. Rhae has had over 20 broken bones.
10. Rhae has the cutest laugh.
11. Rhae loves to touch things and hold them using both hands.
12. Rhae’s hair is turning light brown.
13. Rhae will lay in her room for quite some time watching her mobile.
14. Rhae also likes to look at her name on her wall.
15. Rhae will NOT take a pacifier.
16. Rhae is the strongest person I know.
17. Rhae loves to hear her cousin Halle’s name.
18. Rhae likes to shake her rattle.
19. Rhae likes to watch The Ellen Show to see Ellen dance.
20. Rhae loves to take a bath.
21. Rhae can roll up like a rollie pollie.
22. Rhae will not eat food, but loves her Momma’s cornbread.
23. Rhae can hold her head up for more than 2 minutes at a time.
24. Rhae does not like to be wet.
25. Rhae tries so hard to make everyone else happy, even when she is in pain.
26. Rhae likes to be scared.
27. Rhae is a McCain fan.
28. Rhae only takes two 20-30 minute naps a day.
29. Rhae has finally graduated to 0-3 month old clothes, though they are still a little big.
30. Rhae will watch Sesame Street long enough for me to take a shower.
31. Rhae is an answered prayer and the best gift I have ever received.

What's your financial status?

2008-10-17T21:35:00.000-05:00

Over the last few days, I've really been thinking about our new financial status. For those of you who don't know, we made the decision for me to put my nursing career on hold in order for me to be able to stay at home with Rhae and provide her with the best care possible. We've always lived comfortably and never thought this might happen, but then who plans to have a disabled child? Well, as you can imagine, our monthly income has dramatically declined. I've been worried about the bills, about birthdays, about Christmas, heck, about just going to the grocery store! I started my own little pity party the other night, wishing I was one of the rich people instead of the poor. All of a sudden it dawned on me--I'm richer than I've ever been in my life!! No, the money is definitely not there, but money isn't everything. We went through a traumatic pregnancy, only to have my daughter prove everyone wrong--she fought all odds and made it. I'd say that's pretty rich! I have an amazing son who is kind, loving, and smart as a whip! I'd say that's pretty rich! I have a roof over my head, clothes on my body (as old as they may be!), and don't have to walk anywhere. I'd say that's pretty rich! I have an amazing family who has been so supportive of me all my life, and love me unconditionally. I have a husband who doesn't cheat on me and doesn't run the roads. I'd say that's pretty rich! I have a Heavenly Father who loves me enough to allow me to be here everyday and somehow continue to muddle through what I sometimes feel are impossible situations. Again, pretty rich, wouldn't you say? So, while my bank account is perpetually almost empty, my life is full of things and people that make me rich beyond my wildest dreams! How rich are you?

Our new friends

2008-10-15T21:34:00.000-05:00

Wow, time is really flying by! My sweetie is 6 months old already! We went to the doctor the other day and she was 10# 2oz!! BIG GIRL!! She has been doing so well lately, other than the stomach virus she's finally caught from the rest of us. Like always, though, it's not slowing her down much. She is still all smiles! She is still trying desperately to roll over, she just can't get her lower body to work with her upper body. She's intent though, and will be rolling over before I know it. She is beginning to recognize faces, and she really lights up when she sees people she knows! It has begun to hit me lately just how lucky we are to have her here. I don't know if I've been in shock for 6 months, or what, but in the last few weeks, I have caught myself looking at her and just crying knowing things could have gone another way. I still don't know why we were chosen for this journey but I sure am loving it.
We really haven't had a lot going on recently, but I have had another prayer answered! I keep wondering when I'm going to reach my cut-off point! :) Thank goodness we serve a Lord who doesn't impose limits! Don't get me wrong, I LOVE my OI family on our web group, but several members actually live close enough to each other to visit and I've been stuck down here in the middle of nowhere wanting that commraderie (sp?). Several months ago, I began praying for God to introduce me to another OI family close by...I knew we couldn't be the only ones in the South! Well, what I really expected was to be lead to someone in possibly Birmingham who had an older child with type I or something... somebody that could be a good supporter as well as a teacher. Well, God had different plans and I'm so glad He did! He lead me to a new OI baby, just shy of 2 months old, and with the SAME rare type II diagnosis that Rhae was given. On top of that, they live in SELMA!! That's only about 45 miles from me, for those of you who don't know our territory. Imagine my surprise! Well, even though I felt like I needed somebody that had already been through everything I would go through, I realized I already had that in the web group. This is even better! Rhae and Mary Clayton are only 4 months apart, and will be able to grow up together. I've worried about how cruel children can be, and her eventually developing a complex because she wouldn't know anyone like her. Well, now she will! I met her parents, Stephanie and Robert last week, and it was like running into long-lost friends! There was an immediate connection we all felt, and we both know God brought us to each other! On top of that, Stephanie and I realized how much we strangely have in common! God works in mysterious ways, and we are so glad to have these new friends. Mary Clayton is still in the hospital because she was also born prematurely. She is improving daily and hopefully will be receiving her first PAM treatment soon. She has a head full of black hair like Rhae did and is a pretty little girl! I've seen a picture and can't wait for our time to come when we meet. I feel so attached to her already. As you read this, please send up a little prayer for her and her parents. We are ready for this baby to come home!
My mom is here now and I think everyone has really enjoyed visiting...her with the grandkids, them with her, us and her, etc. Aidan has really missed her and has been glad to have her here for a while! She was really surprised at how much both Halle and Rhae have changed. I've added some new pictures recently so you all can see as well! I don't have much else to say for now, so I will leave you with this...

From the beginning

2008-09-11T21:34:00.000-05:00

There has been so much going on in the last 5 months, so I will try to make a quick synopsis and then hopefully keep everyone updated at least monthly! Rhae now weighs 9# 6oz. and is 19 3/4" long! She started her Pamidronate infusions back in May. This is a 4 hour IV treatment that we get every 8 weeks. It is a biophosphonate, similar to Fosamax (the one most people have heard of), and it increases her bone density, therefore decreasing her risk of fractures as well as her bone pain. We had our 3rd treatment last week. Things have really gone well for our little miracle. When she was 21 days old, she broke all 3 bones in her right arm, and 1 bone in her left arm. Until today, we thought that was all that had been broken since birth. We went to the doctor today for a lingering cold and had a chest x-ray done to rule out aspiration pneumonia, and there they were...several fractures we didn't know about in various stages of healing. There was one in the humerus bone (top part) of her left arm, and at least 4 ribs on the left side. We couldn't see all of the ribs. There is also a questionable compression fracture in one of her vertebrae in her spine. How in the world all this happened and I didn't know it is beyond me! I swear, the little girl is strong as an ox--nothing like her mother! But, none of that has slowed her down. She loves hands...doesn't matter who's they are, hers, mine, yours, anybody's...she's just fascinated with them. She'll hold hers up and look at it like it is the most amazing thing she has ever seen. Mandy and I get tickled because she'll move her fingers like she is counting. I can't help that my children are so smart!! :) She had been trying to roll over up until about 3 or 4 weeks ago. That was about the time she started having pain before her treatment was due, and also about the time I began to question some fractures (little did I know then...). She is beginning to hold her head up some when she is on my shoulder, but still does not have very good head/neck control and no trunk control, but we're getting there. We started physical therapy this week and I love our therapist. I think she is going to teach Rhae and me lots of stuff! She did let us borrow this really neat floor chair that is adjustable for me to try to start feeding Rhae in since she has started to show some interest in foods. It's great because I can recline it and don't have to worry about her head and neck. She seems to like it and looks like such a big girl in it! So far, we've had bananas, applesauce, and sweet potatoes. I don't think she likes the fruits too much, but they are very sweet tasting. She ate some of the sweet potatoes tonight and seemed to enjoy them a little more, but was just feeling so bad from her upper respiratory infection that she just had no desire to finish. She giggles and coos a lot, and is very good about fussing at you if she is mad! I wonder where she gets that from? She is reaching for things and really beginning to hold things very well with her tiny hands. She grabbed her rattle today, and for the first time, actually knew what to do with it. She would throw her arm up and down and just smile when she heard it. She would stop long enough for me to tell her what a big girl she is, then start back! She also saw her feet for the first time today! She's been holding her legs up, but actually caught a glimpse of her foot and just sat and looked at it! It was so funny, because she got so still, and then you would see her move her toes, then stop, then do it again, so I think she realized it belonged to her! Unfortunately, her little arms are too short to hold her feet, but I guarantee you, she''ll find some way to get ahold of it soon! Well, I guess that about gets everybody caught up. I can't think of anything else major that has happened. Oh wait!! She watched her first Alabama game 2 weeks ago and really watched it. She and Halle sat in their bouncy seats in front of the TV and she never took her eyes off the game. She even cheered once when they made a good call! She's going to fit in just fine with this family full of sports nuts! Ok, NOW I think I'm done. If I think of anything else, I'll come back and write some mor, not that you haven't read enough already!