Well, it's over

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!

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

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!

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

We're home!

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!

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

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...

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

Bo, Nana, Aidan, and Rhae

Aidan and Rhae

Wolverine

Have you ever seen a cuter ladybug?



Little Miss Ladybug

Where has the time gone?

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

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

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?

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

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

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!