Thursday, November 6, 2008

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!

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