KANSAS THANKSGIVING

This picture was taken a few months back when Great Grandma Armer (Ryan's Grandma) was in town visiting from Kansas. I can't believe how young Bentley looks in this photo, she has a head full of hair now!! We unfortunately do not get to make it to Kansas as much as we would like. Ryan is from Kansas and everyone on his side still lives there except for his parents and sister, they are here in Texas with us. Ryan's job allows him to only be able to take vacation certain months of the year and that makes it even more difficult. We would love to go during the Holidays so we can visit all his family on both his parents sides, any other time during the year it is hard to get everyone together... but Holiday months are the months he cannot take off. He is in the wine business and of course Holidays are the peak of wine so he is very much needed. It is so fun there, the weather is completely different than what I'm use to. I have seen snow every time I have been there where as here in Texas I have seen very little snow. Our snow is not anything compaired to theirs. In Kansas when I have seen it.. it is WHITE and deep (you can play in it)... in Texas the snow barely covers the ground and it is yellow since it's not so deep!!! We have made 1 snowman and he was about 2 feet tall (Bryson was almost 3 and Brenna was 2 months old) and that took A LOT of work and ALL the snow in our yard. It took hours and the snow was melting by the minute. Oh and yes!! Our snowman wore a cowboy hat for laughs!!! I will have to find that picture. So we really wish we could make it there during the Holidays... but this Thanksgiving half of his family will be coming to Texas. Grandma Armer (above) and her daughters & family will be enjoying Thanksgiving here!!! YYAYYY!!! We are very excited and look forward to seeing them all. I could not ask for better inlaws, they are so great!!! We miss them dearly and often wish they would pack up and move down south!!!

I know many of you are from all over the world and I would love to hear how you celebrate Thanksgiving.. and your family traditions. I am facinated by how different everything is in other locations. I am a small town girl and to be honest I have only been out of state when we went to Kansas. So I would love to hear everything about your Thanksgiving. I am not sure how I want to do this, so I want your feedback. The easiest way is to have you post about it... you can just leave me a comment and I can go to your blog and read all about your Thanksgiving traditions... then I wondered if my blog friends also want to know how other people celebrate Thanksgiving so thought maybe Mr. Linky? That way you can get to everyones blog from my blog and read them all yourself as well??? Which do you think. Comment or Mr. Linky? We will probably do this Tuesday or Wednesday... I will let you know once I hear what most of you want to do? Just comment or email and let me know!!!

PS.. I think I am going to do a blog design giveaway here very soon. I have a couple of mine that I have used before and no longer need... I might as well give them away!!! I will keep you posted!!!

CRAZY SWINE FLU

It has been WILD around here lately!! We have been so busy with school and sports, while trying to dodge the swine flu at the same time. The kids are loving school and I am enjoying this one on one time with Bentley. Two nights ago she started taking a couple steps at a time. It is still work in progress.. but she is doing so awesome!!! It is so darn cute, she takes fast and choppy steps. I just love it!!! I haven't been able to capture this on video yet, hopefully soon.

So I mentioned the swine flu... I have post about the swine flu once before and just how scared I was of it. Now it seems almost normal for everyone around us to get it. We thankfully have not experienced this first hand yet, and I sure hope it stays that way. Even though Bentley has already had her surgery, her heart is not considered "cured" it never will be. She is a heart baby and will be for the rest of her life. So it's still safe to say that if she gets it or anything else similar we will be headed back to the hospital and probably TCH at that (rather than our local).

To give you an idea of just how bad it has gotten... There are 19 kids in Bryson's class - 2 days ago 9 kids were absent due to either swine flu or strep throat, yes NINE (half the class, unreal)!!! Yesterday, there were 8 kids out for being sick. And that is just Bryson's class. It has hit our town and hit it hard. At the moment it just feels like we are waiting our turn to get it... and I don't like that one bit. We are doing anything and everything we can to not bring these germs home.. but not sure if that will be enough. We are very blessed that Bentley has not ever really been "sick" she has had a runny nose a couple of times before surgery but it was minor. No real sickness though, so I just pray her body keeps fighting these germs. There have only been a couple of kids out in Brenna's class and I am happy to hear that, I sure hope it stays that way.

So how is the swine flu in your town? has it hit? bad? I want to know...

I was going to do my Q&A post today, but I wanted to talk about the swine flu first, I am really interested in hearing how it is around the world.

*** The media and some others brush swine flu off now since it is similar to the regular flu... Before Bentley I would probably understand this, but now... I don't. It is important and I don't feel that they take some of the children or other special needs people in consideration when informing us of this. It seems to spread faster and hit during not normal flu season... regular flu would still be hard on Bentley and she would probably still be admitted, but I hate that some people sort of put down others for being worried or concerned about this and they are very verbal about that. I'm not talking about anyone particular.. just in general.. media. There are so many out there that if get this it will be life threatening... One example: around here they have quit testing for which flu... regular or swine. Before seem like everyone kept numbers of how many people were getting this and now that so many are... they want to hide that fact. Sorry! But that doesn't fly with me. I want to know what we're dealing with. But that's just me. I'm just sayin'

Oh and if you have sent me your heart babies, I have been getting them. I haven't been on the computer much lately so not a chance to update that page. I will have them added this week. Thanks so much for sending them to me, there have been so many new heart moms emailing expressing how thankful they are for coming across it.

The weather is cool here, and I'm loving it. Starting to feel like winter in Texas (if that's possible)... getting me pumped for the Holidays!! I also noticed I need to take Bentley shopping for some winter clothes!!! =)

Have a great day y'all!!!

FAMILY FUN DAY

So this morning we thought we would spend some family fun time out of town. This was totally random.. it is about a two hour drive and we never just up and go like this. But, this past week of Spring Break hasn't been the most exciting. All the rainy weather has left us couped up inside all week, no outside fun time, no practices, just not a lot going on. The rain has gone away but the puddles are still here.. so we thought we would just get out of town for the day. We didn't do much, but it was nice to just get away and spend time with each other and not think about things. With that said, we obviously did not think things through.. we ran into major traffic on the way there.. after all it is the end of Spring Break and people are on their way home from vacation. So our two hour drive there ended up taking about three and half hours. It was a smoother trip on the way home, no traffic whatsoever. We ended up getting home about 11:00pm last night and the kids were exhausted. We had an amazing time, I am so glad Ryan suggested it yesterday morning. I would like to do things like this more often but maybe a little more planned next time. ha.

(it was a very windy day, can you tell?)

Happy Birthday Casen and Presley! I have goodies for you and will bring them by soon! Big hugs & lots of love!

Also.. I have recently talked with another heart mommy with a different diagnosis.. and I am asking that you please keep Owen in your prayers. This is an amazing family that has touched my heart and they need our prayers as well.

NEW SURGERY DATE

I received a phone call yesterday morning. Bentley's new heart surgery date is May 20, 2009. I don't see the surgery date changing.. this is a surgery they normally do at 6 months or less if the child cannot wait that long, and they never want to go past 1 year of age. So this is the day. This is the day I have dreaded for 5 months now. But with our faith, and your love, support, and prayers we'll get through this.

<a href="http://thewelshfam.blogspot.com"><img src="http://www.preshwebdesign.com/images/BentleyButton2.png" border="0" alt="" /></a><br/>

There have been a few of you email or comment about a link for prayers. Thank you so much for your support and prayers. It means the world to me!

* Ryan and I will be spending our 7 year Wedding Anniversary in the hospital by Bentley's side. Our anniversary is May 25. But that is fine by me.. all I want is for my baby girl to be okay!

Blessings,
Crystal

CHANGED DOCTORS

Now about the last appointment we went to.. we made the trip 4 hours away to see a Pediatric Cardiologist and Pediatric Heart Surgeon. This is the surgeon, I referred to in my last post. The surgeon I have heard and read so many amazing things about from the beginning. From day 1 we felt a bit pressured to go to certain places, as if we didn't have a choice.. anytime we mentioned this Dr. 4 hours away they would just question us.. why, why would you do that when you have 2 great locations an hour away. With Bentley being so healthy since day 1, I guess you could say I have been in denial about her heart condition. I have always been a mess emotionally but I have been in denial at the same time. Our December appointment with the "old" Dr. , they decided to go ahead and schedule her heart surgery for Jan. 27.

The day they called and told me about her scheduled date.. I went into panic mode. It finally set in that this is going to happen.. she really does have this heart condition and my baby girl is really going to have to go through this. So I remembered the "amazing" Dr. from the beginning.. I had already researched so much about this surgeon.. but finding out about the surgery date really made me sit down and think about what WE really want to do and who WE really want to perform open heart surgery on our daughter. So I immediatley "googled" this surgeon again. Let me just tell you.. for starters the childrens hospital we have decided to go with is about 4 hours away. This hospital is ranked #6 best childrens hospital in the US. Yes, that's right #6, just amazing! Let's break it down a little more.. this hospitals heart and heart surgery center is rank #3 best in the US! Absolutley amazing! I was in awe when I read this information. So now about the surgeon.. he is the "cheif surgeon" at this childrens hospital (the largest childrens hospital in the nation), "cheif pediatric surgeon at a well know medical college, he holds many awards, he has implanted the world's first DeBakey Child™ cardiac assist device (which is like a man made pump, no Bentley will not need this but it is pretty amazing he accomplished this), he is author in over 100 articles and medical textbooks, and he and his team has performed over 6,000 pediatric cardiac repairs and surgeies in children (this number is from an older article I found so it is well over 6,000). I cannot tell you how much I admire this man. His accomplishments absolutley amaze me! Oh, and I forget to mention he has been featured on THE DISCOVERY CHANNEL for saving lives! So after reading all of this time and time again, I called to schedule an appointment. The receptionist immeditaly transfered me to his nurse and I explained to her everything that was going on. We then had Bentley's echos and reports mailed to this Dr. and nurse. Within a week I got a suprise phone call from none other than the Dr. himself. Can you believe this super busy Dr. took time to call me personally when we are not even patients yet. He just wanted to let me know that he has received the information and viewed her echo. He agreed with the other cardiologist and said he would love to see Bentley if that is what we wanted to do. I just have to tell you.. I was in such shock I was stuttering and nervous.. so I'm telling him how I became familiar with him and then I decided to tell him "I just can't get you off my mind, I'm always thinking about you!" HA!! After I said it I know I sounded like a freak. I probably scared him, it totally came out in a weird way. Back to the suprise phone call. I can't even get my regular family Dr. call me, and this Dr. did. I was blown away. I spoke with his nurse and said yes, lets do it set us up for an appointment as soon as possible. She said to get an appointment with the cardologist and surgeon in the same day would take a while (at least a month away because they are so big), and Bentley health wise would be fine to wait. This wasn't working for me.. I told her no big deal, schedule us for 2 seperate days we'll drive we don't care at all. So she scheduled her cardiologist appointment for Jan. 16, and we were waiting to hear an appointment date to consult with the surgeon. When she called to tell me about that appointment, she said that the surgeon agreed to see Bentley on the same day Jan. 16, let me tell you just how nice he is.. Jan. 16 was a day that he does not see patients. He saw my baby girl when his office is not even open. I just couldn't believe how wonderful these people were. They seriously have bent over backwards for us. I am SO thankful we made this move. The appointment went just as well. Cardiologist agreed with what the other 2 have said only he did give us more information about it, the surgeon told us what we could expect from the beginning to end. We did not even have a chance to ask questions because he told us EVERYTHING before we could even ask. It was perfect, everything about this day went well. I for the first time since we found out about Bentley's heart felt that everything is going to be alright! We learned so much at this appointment.. we found out that Bentley will need a blood transfusion. I was not aware of this, so it scared me a bit. Then he told me that as long as we were a match Ryan and I could donate our own blood to her. How amazing is that. I do know that Bentley and myself are a perfect match. I am going to get ours tested again just to be sure. So I will be giving Bentley some of my blood for her surgery. We are still going to get Ryan's checked so we can have extra. This made me feel so good that I am going to be able to do this for my baby girl. I have donated blood in the past but have been turned down a couple of times because of being low on iron. So I am really gong to have to get it together for this big day! I feel so good to do this for her. With that said, it really opens my eyes on the importance of donating blood. Many many people do not have the opportunity to donate blood to their child for many different reasons. So in the case they depend on the blood bank in the hospital which comes from very generous people. This is another one of those things you don't think about until it happens to you. I have donated blood a couple times before and I never thought it was a big deal, but now looking back, there is someone out there with my blood! I will definetly be donating blood on a normal basis. It is needed. Back to the appontment.. I know I have posted a lot and I am leaving a lot of information out of this post but I have to end it somewhere. So if you have any questions, let me know. I really do not mind answering them.

As far as our upcoming dates.. both the cardiologist and the surgeon agree it will be best to perform the surgery in April or May. I was happy. This was good news. Even more good news.. remember how heart babies are seen about every 4 weeks, but Bentley has been seen every 8 weeks because of doing so well. They have informed us that she will not need to be seen until the surgery. YAY!! GO BENTLEY GO BENTLEY!! This is a blessing.. for Bentley to have this condition and be able to go this long without being seen is absolutley a miracle itself. This is just unheard of. All the Drs. tell me time and time again how blessed we are that Bentley does not have any symptoms. They continue to tell me how sick most babies with TOF are. I tell them I know, that is what the last Dr. said.. and they say "NO" you have no idea. They tell me I have never seen another baby that has this I don't know how it really is, all babies are different, they see it all day everyday. I truley believe this is a miracle itself, I am so thankful for this. I could not be more proud of Bentley, I love this girl to pieces!!!!

So now.. we sit and wait. We sit and wait for the surgeon's office to call us with a surgery date.

Sorry such a long post I just want to let you know how amazing this place is. Thank you for all your love and support. Please keep Bentley in your prayers.

Blessings,

Crystal