Tuesday, December 15, 2009

100 Days


It seems like an eternity since Bri has been gone. Long days and longer nights. We did put up a Christmas tree although it is sparsely decorated. Just this past weekend Jerry put the lighted cross out by the front door. We thought we would string up the lights on the house but haven't had it in us yet. Maybe we will, maybe we won't.

We got through Thanksgiving. Jerry had a business trip to Denver and thought it would be good for me to go with, so I did. We stayed out there for a week. What a beautiful part of the country. Went snow skiing at Copper Mountain and Monarch Mountain, even made a snow angel in memory of Bri. Jerry got it on camera but I haven't uploaded it yet. It is really sweet.

I spent a week at my mother's house doing holiday stuff with my mother and sisters. It was so hard. Just bittersweet. Initially we were going to go visit for Christmas but decided we would rather stay here in Orlando.

On December 4th we attended a breakfast for Hospice of the Comforter (in Altamonte Springs). Bri's story was one of 4 featured on their video. What a beautiful tribute to both Bri and the services provided by Hospice. I've tried uploading it too but....brain cells can't figure it out.

I've had a trying afternoon. Have been making calls regarding unpaid medical bills. Wondered why we were getting them (after having no problem reaching our deductible this year) and found out that somehow they were requesting payment from an insurance company from five years ago. Apparently insurance info stays out there in cyberspace and was picked up by some of these companies. What makes it so trying is I have to call, wait, explain and then most times they will ask if the person is still insured. That's when I drop the bomb. Most times they can't get off of the phone fast enough.

We sure do miss our sweet little baby Bri but feel comforted in knowing that she is in heaven singing with the angels.

What the heck, here's some pictures from 2008, as I have said many times before, isn't she the cutest thing ever?










Merry Christmas

Thursday, November 5, 2009

Ashley's Video

This is a video/photos that Ashley put together when she got her first "ink". As to be expected, it makes me smile because of how proud I am of Ashley yet I cry because of how much I miss Brianna. I just continue to repeat over and over, God is good, God is good...but the one thing I will tell you though is when I first see him, my first question will be, Why?.....Why?

Monday, November 2, 2009

Sweet

Just a sweet iphone video that should make you smile and perhaps cry. The red light is the O2 monitor on Bri's toe.

Monday, October 26, 2009

Here I Am

I don't know how else to title this chapter except to say Here I Am, or actually Here We Are....moving on with life. I can't say we're moving on without Bri because although she is not here physically, she IS here, in our hearts and thoughts. The thing about grief is dang it, it can sneak up on you right out of the blue. The first days after Bri died, the grief was different. The pain she was in the few days before death helped us to realize that it truly was a blessing that she had been received upon the Lord but as the days and weeks progress, it's harder to remember the pain she as in because our pain of missing her sweet little smiling face is so overwhelming. It's harder to go into her bedroom without sobbing. I know this will pass and that it will eventually get easier and I don't want to rush it because I need to feel this. I just need to feel it.

On another note, we have been asked to share our story with Hospice of the Comforter here in Altamonte Springs and today is the day. A local television crew will be filming us in a couple of hours. I can feel the tears already. The story will "debut" Dec. 4th at a Hospice fundraiser. We will keep you posted.

Monday, October 12, 2009

Oh Sweet, Sweet Brianna

I can be having a pretty decent day and click on Bri's website and the tears begin to stream down my face when I see that gorgeous smile on sweet Bri. Thank God that she was so very happy during her short lifetime.

Life is going on at a much different pace now. I am actually getting through some of the "stacks" of "stuff" that piled up the last couple of years. One would think I would have a lot of time on my hands but actually I don't. Well, I probably could but I prefer to keep busy, it keeps the sadness from creeping in on me.

Jerry is back to work full time, traveling a lot and not liking it at all. I don't like it either but right now, that is where we are at job wise. Praying every day for something to happen / change up so he can be at home more.

Ashley is back in school and working part time. I don't get to see her very much which makes me sad but I have to get used to the fact that she is 17, almost 18 and at that age, who wants to hang out with their mother?!!!

We've started a flower garden between our house and Kathy's house and it has been officially named "Brianna's Garden". Kathy and Jim bought a beautiful angel statue and cross for the garden. We both planted various flowering plants that attract butterflies. One of the hospice volunteers, Ann P., brought over and planted a beautiful pink hibiscus. She officially dubbed the color "Brianna Pink". Here in the near future I will take some photos and post them. The garden is really beautiful and the butterflies have been feeding daily.

Please note the Brianna Gives Hope Foundation info on the left side of the site. Things are happening....we are very excited.

Brenda

Wednesday, September 30, 2009

I feel you baby Bri, I feel you...

This morning I slept in. The house was cooler and the bed so very comfortable. Once I was out of bed I realized why, we had a "cold" front come in. Here in Central Florida, a "cold" front means it is NOT 95 to 100 degrees outside along with 100% humidity. Anyway, the temperature in the house was 76, yeah I know, LOL. Continuing on with my morning, I opened the blinds, made some coffee, opened up the back porch for Belina and OMG, the weather outside was glorious, absolutely glorious. As quickly as I could I put my shoes on and took Belina out for a walk and then the tears just starting streaming down my face...Bri was everywhere, I could feel her presence, I felt as though her arms were wrapped so tightly around me and even though I am back inside typing this, she is here with me. I feel so blessed to be able to recognize the feel of her love, the feel of Christ's love. Thank you baby Bri for this very special time together this morning. I love you so very much.

Monday, September 28, 2009

What is there to say

I know...I have been away for some time now but in all reality, what is there for me to say? really, what is left to say? Each and every day I wake up and think ohhhhhh another day. I can't believe how fast the time is going by. Bri died 3 1/2 weeks ago yet it seems like yesterday. Upon her passing I felt that I had no regrets that I (we) had left no stone unturned but as the time continues on it is easy to find things that I regret, just holding her a little more, singing to her a little more, hugging and smelling her a little more....we just miss her presence in our lives so very much. My heart aches like you couldn't believe. Jerry is back at work full time and Ashley is back at school full time and I am working at the house sorting out "stacks" of "stuff" that have been stacked up for the last 2 1/2 years. LOTS of filing and organizing to do. I hope in the near future to find at least a part-time job. Guess I will see what God has in store for me next.

We so appreciate the many donations made to the Brianna Gives Hope Foundation and Jerry and I are working with the folks at our church, First Presbyterian Church of Orlando's Heart of the City Foundation, to make each and every dollar donated to Brianna Gives Hope counts. We feel honored to have FPCO's Heart of the City Foundation work with us to make a change in other people's lives. Jerry, Ashley and I feel so incredibly proud to be able to honor Brianna's life in such a way to help others. God has been and continues to be so good to us. We will be sure to keep you posted on information regarding Brianna's Foundation.

Good night sweet baby Bri.....we miss you so very much.

Tuesday, September 22, 2009

Shining Down

Jerry and I are in Atlanta....talk about rain. Goodness, it's been raining so much that houses are flooded, roads are closed, schools are closed....forecast called for rain today too but little Brianna and her T-18 friend, Christina took care of business today and had the sun shining for us. Christina is the daughter of Mills and Kathryn, whom now reside here in Atlanta. They are the first couple we met with a child with T-18. Christina lived here on earth for 13 months but without even having to say it, she still resides here on earth in her mother, father, grandparents, and many others including us. It's comforting to know that today both Brianna and Christina were smiling down upon us with BIG rays of sunshine. Thank you sweet angel pies.

Kathryn was gracious enough to spend the day with me. We talked, cried, talked, laughed, window-shopped. I thoroughly enjoyed the day. A big thank you Kathryn for your time.

Sunday, September 20, 2009

Reading the blog

I just opened Bri's blog again, or actually my blog about Bri and read my last post....oh, it sounded so sad. Part of me feels like I should apologize but then another part knows that I shouldn't because that is where I was at that moment. That is how grief is, up one moment, down the next.

I'm feeling pretty good right now, yesterday I went to a conference with a wonderful girlfriend, the presenters were Beth Moore, Priscilla somebody and Kay somebody (I love it when I really know what I am talking about...lol) and what light they showered on me. More on that later but let me tell you, if you want a GREAT bible study, go online and look up Beth Moore....she is something else.

Today Jerry and I went kayaking in the Winter Park chain of lakes. Surprisingly, we missed church to do this. I learned from Beth Moore that there are times when you have to really look and see what is important "this day" and do it....today it was important for Jerry and I to get out and be together. We are glad we took the time to do this, it was a great day, there was no doubt that we were blessed for doing so.

In the morning I am flying to Atlanta with Jerry. He is returning to work. What a difficult time and I want to be there to support him.

Ashley spent the weekend at the beach and took some great photos of Bri's best friend, Susie....they are so sweet. Check them out on my facebook account....brenda langston botts.

Special thanks to Jesus Christ, he is such an awesome God.

Good night all. Especially to sweet baby Bri.

Friday, September 18, 2009

oh where to start

I open up Bri's blogspot and can't stop crying. The tears are pouring like rain. We miss her so much. Her absolutely beautiful happy face radiating out from the blogspot. It has been 15 days since she died. Died, I have to say that word. I can't continue to say the unreal words like "passed or gone away". Brianna has died, end of sentence. Yesterday I was at the doctor with Jerry, it appears that he has thrown his back out, and luck would have it (although I wouldn't really call it luck) that I would look at my watch right at 2:55 pm, the time she died two weeks ago. Tears, tears and more tears.

Jerry had planned on going back to work this past Wednesday. I was going to go with him to Atlanta, with a stop in Savannah on the way, just to be there together but that didn't happen. We couldn't do it. Couldn't leave the house. Every day we kept saying "ok today we will get out and do something". never happened until today. We finally got out and went up to the Wekiva River and sat on the riverbank in adirondack chairs and just enjoyed the outdoors. I could feel Bri's presence in the beautiful outdoors. She was there with us for sure. Big angel hugs and kisses to you Bri, mama, daddy and sissy miss you so very much.

Tuesday, September 15, 2009

It's All About Love

It's been a very difficult week. I have so much on my mind that I want to put into words...the time will come. Here's the video Jerry and I put together for Bri's memorial service. Big thanks to Tom Mills for his help. Couldn't have done it without him.

Wednesday, September 9, 2009

Seven Days Ago

Seven days ago at this time we were begging God to take Brianna. She was in so much pain. But he was gracious enough to calm her and give us another 15 hours with our little angel. 15 hours that she was at peace and in no pain.

I'm here tonight with some rambling thoughts. Today Jerry and I designed Bri's Memorial card to be handed out at the service....no worries to those who can't be there, I can mail some out. Then we went over to First Pres. and figured out the schedule for Bri's memorial service. No tears, almost, but just teary eyes. "Bri is in a better place, Bri is in a better place".....keep saying it silently to myself.....and maybe just maybe I can hold myself together until I get home or at least in the car. Lasted until I got home and then cried myself silly. I know this is part of the grieving process but dang it.

I have to say I am pleased with myself in in the sense that I can look at, touch and talk to babies and small children without tears. Actually, I feel no sadness at all when that happens. I find myself feeling very happy for the parents for their having those dear children.

I am proud of Ashley. She almost wasn't ready to come into our house yet (afraid of all the Brianna paraphenelia laying around) although I did assure her that we had straightened up quite a bit and well, she then decided that yes, it was time. And it was all good. We had a nice afternoon, me, Jerry and Ashley. Went to a casual dinner, stopped by the mall and took her home early since she had quite a bit of school work that needed to be completed. And, in the middle of it all, received a call from the funeral home stating that Brianna's ashes were ready to be picked up. Here I go again, don't think about it, don't think about it, "i'm sorry Ashley, what did you say again???

One more thing I want to share. This morning when I awoke, Jerry was not in bed. He was on the couch. Said that he woke up around 2:00 am and simply couldn't go back to sleep. He was thinking about Brianna and how I felt her presence when the lady bug had landed on me days earlier. He said he was wondering if he would ever get a sign from her, and would he feel it or see it?.....Picked up his iPhone and started reading chapters of the bible, just searching for answers to whatever, got tired, placed his phone under his pillow and started to doze....then his phone beeped signaling that he had received an email....so, when he picked up his phone and looked, it was from me, and it was a picture of Brianna......yes, amazing, huh. Several days earlier I sent him that picture but he never received it until 2:33 am. Just when he needed it, sweet Bri said hello. God is so good. I think I will close on that warm and fuzzy story. Good night all.

Tuesday, September 8, 2009

Five Days

It's been five days since Bri left this earth. Five days of serious ups and downs, crying, smiling, remembering and being grateful. We miss her so darn much and our hearts are aching. Ashley had to go back to school today, God bless her because it must have been very hard. We love you so much and can't imagine being a teenager experiencing this kind of pain.

As I said in my last post, some friends gave us tickets to Cirque du Soleil for last Saturday night. As it was getting time to leave for the show, we both agreed that we would rather stay home but in our hearts we knew we needed to get out. So we went. The show was awesome, there are no words to describe it, it's simply an amazing one hour and 40 minutes of mouth gaping entertainment. But still, we really weren't there. We were watching yet completely numb at the same time. Cried all the way home.

Brianna said hello to me first thing Sunday morning when I was out with our crazy puppy dog, Belina, by showing up disguised as a lady bug....landed right on my sleeve. We miss her so very much. Going to church on Sunday was a great feeling. Our church family has been and continues to be very supportive. Thank you to our family, friends and church family for being there for us Sunday. It made all the difference in the world.

Monday morning we decided to get up and get out again....maybe go kayaking for a couple of hours instead of sitting home being surrounded by so many memories. We went and it was a nice day.

Lots of things to be done this week, the kind of things you don't want to do so it is easy to procrastinate, but we're getting through it, little by little.

Mama Kathy stopped by a little while ago and we started looking at pictures and videos that I recently downloaded onto my computer. Can't wait to edit and post some of them. The memories had us smiling, not crying...that's a good thing.

Memorial Service planned for Saturday, Sept. 12 at 3:00 pm at First Presbyterian Church, Downtown Orlando
In lieu of flowers, donations can be made to "Heart of the City / Brianna Gives Hope", 106 East Church Street, Orlando, FL 32801.

To see the notice in the paper, visit Orlando Sentinel.com, obituaries for Sunday, Sept. 6th.

Ashley and Brianna at 8 days old


Brenda and Brianna at 2 months old


Daddy-O and Brianna at 3 months old

Saturday, September 5, 2009

What a Draining Day

Jerry and I are wiped out. It's been a very emotional day. We went to see Bri....she was so pretty. Resting peacefully wrapped in her grandmothers quilt and her bear-skin plush rug on top keeping her snuggly. Pretty Florida dress and matching bow. My sister Judy suggested getting Bri's hand and footprints on paper as a keepsake. Of course I took it a little further...and had Bri's footprint stamped on my forearm....Jerry followed suit. No, it's not permanent but it will stay for several days if we are careful.
Came home and wrote Bri's obituary, whew, it will be published tomorrow in both the Orlando Sentinel and the Northwest Daily News. Both newspapers can be read on-line.

Tonight we are going out to Cirque du Soleil. Some friends gave us the tickets. Jerry and I could just stay here at the house on the couch taking turns sighing......stress.....but we're not. We are leaving shortly to get out and get some fresh air.

Thank you Connie and Chuck for the Kahlua pound cake and red wine.....both were delicious. Church tomorrow. We are looking forward to meeting up with our friends and giving glory to God for our family. You are more than welcome to join us. 11:00 am Genesis Service, First Presbyterian Church Downtown Orlando, front row, baby!

Friday, September 4, 2009

Memorial Date

Brianna's Memorial is scheduled for Saturday, September 12, 2009 at 3:00 p.m.
First Presbyterian Church Downtown Orlando, in the sanctuary
106 East Church Street
Orlando, FL

In lieu of flowers we request donations be made to our newly formed non-profit organization: Brianna Gives Hope
We will be posting information on how and where to donate by Tuesday. The Brianna Gives Hope foundation has been created to help other families in similar situations with respite care, provide happy, colorful hospital gowns for sick children, equipment, and that is just the beginning. Our goal is to give back, Brianna gave us so much and we want to pass on the love.

I'm sure Brianna would be pleased to look down and see everyone wearing bright colors at her Memorial for this will be a day to celebrate her life, not mourn her leaving.

We are also checking into hotel information for out-of-town visitors. Should have that posted in the next day or two as well.

One more thing, Jerry and I will be going to church this Sunday and invite you to come with us. God knows we need all the support we can muster at this point. We will be attending the 11:00 am Genesis Service at First Pres. (address above). Meet us under the angel wing (just ask when you get there) or in the Genesis service, we plan on sitting in the front.

Thursday, September 3, 2009

Angel Wings

Brianna has earned her angel wings. Today at 2:55. She was not alone. I was holding our sweet baby Bri in my arms, while Jerry, Ashley and Mama Kathy were right there huddled with me. We were all loving on her.

Please understand if we do not return phone calls, texts or emails.

Memorial arrangements to be posted.

Our Sweet Angel Pie

Oh how life can change in the blink of an eye. I took this picture late yesterday afternoon.



Earlier today, resting comfortably at the Hospice House.



Please continue to pray for comfort for sweet baby Bri please.

Still With Us

Bri is still with us. We are all wiped out. Last night was so bad that we were praying for Jesus to take her in his arms. There was no comforting her, even with medication. But once again our God showed mercy and opened up a room at the Hospice House (less than 5 miles down the road) and we were welcomed into the facility after midnight. This is a hotel-type facility complete with nurses and doctors who are here to offer comfort care not only to Brianna but to us as well. Everyone has been so kind. Bri is sleeping right now, so is Ashley. Jerry ran home to take care of our sweet puppy dog Belina and I am sitting in Bri's bed at the foot just watching her sleep peacefully.

Wednesday, September 2, 2009

It's a Horrible Night

Pray, pray, pray for comfort for Brianna. The time is near, very near.

I guess from this posting you can tell the doctor appt. didn't go very well. Her heart has deteriorated rapidly. He said she has less than 14 days to live, that's two weeks, less than 336 hours, less than 20,160 minutes.....and that was earlier today. Earlier this evening her heart started racing up and down again, meds didn't help, we had to call the hospice nurse, she is here now. It's not good. We are so very sad.

Tuesday, September 1, 2009

ZZZZs are Calling

We are tired, all of us. That is why I am posting early in hopes that all of us will be getting some sleep soon. My mother has been here for a week and she is leaving tomorrow. We will miss her as she has been a big help. Brianna was up this morning around 5:30 then took a nap around 8:30 and at 10:45 I couldn't help but wake her up. After that she was quite lethargic and whiny. Her heart rate would go from 80 to 135, drop back down to 92 then up to 148 all in a matter of seconds. I learned later this afternoon that when the heart rate is going up and down like that it is very exhausting to the person it is happening to. Around 3:30 her heart rhythm got back on track and she was her happy-go-lucky self.

Thank you to Kristen and Madison; Darlene and Max for visiting and bringing lunch. Unfortunately Brianna wasn't in the mood to visit. Another thank you to Cassie for coming over and giving us a break this afternoon.

Tomorrow morning we have an appt. with Brianna's pulmonary doctor. It will be interesting to see what he has to say. Brianna has been on oxygen for a week now and appeared to have stabilized somewhat until today. Of course I will post later tomorrow.

Thank you to all the emails, facebook entries and blogsite entries. I wish I could write each one of you back but the time is just not there. I so appreciate the heart-warming thoughts and prayers.

Brenda

Monday, August 31, 2009

Staying in Bed Sounded Like the Best Idea

When I first opened my eyes this morning, all I wanted to do was cover my head and stay put all day long. We had an appt. with a man from the funeral home. So, get up, get a shower, don't think about it, drink coffee, don't think about it, check on Bri, don't think about it...walk the dog, don't think about it.....he pulls into the yard and oh, there's no words. Thank goodness he wasn't driving a vehicle marked accordingly. I asked him when I called last Friday if the vehicle he would be coming over in would have any type of business identification on it and he said no. Thank God for little things.

Mr. Dan was such a nice, respectful christian gentleman. He stated that he knew how we felt because he and his wife also had a child pass away at an early age. I was ok until I had to fill out a form with Brianna's information. That's when the tears started to flow....Right now we are planning on a Memorial Service and not a funeral service. There is absolutely no way that neither Jerry or I could stand to see a child-size casket. I don't think I could even walk inside the church without losing my mind. Anyway, we made it though the preliminaries.

The stress we are under makes simple ordinary things HUGE. I can't seem to stop crying, I don't want to be in the house waiting for the time but nor do I want to be away from the house and lose precious time. I say mean things to Jerry, I find myself isolating myself, I can't quite explain it except to say that it hurts so bad. I want this chapter in my life to be over yet I don't want it to be over. And for all of you T-18 moms out there whose children are alive, if you are like I was before this pulmonary hypertension death sentence, I hung on every word other T-18 mothers said hoping and praying that what they were going through would not be what I would be going through one day. I always wondered exactly what would take Brianna's life, a cold turned to pneumonia, cancer, just what would it be. All I have to say now is that it could be worse. As far as we know Brianna is not in any pain. That is our continued prayer at this time. No pain for sweet baby Bri.

Sunday, August 30, 2009

A Day to Give Thanks

A day to give thanks because we are enjoying yet another day with our little miracle baby girl, our older daughter Ashley and Grandmother. Bri's first venture out in a week to church this morning and we enjoyed every minute of it. Oh, to look at Brianna is so deceiving. She presents so healthy and happy yet it is her heart and lungs that are giving out. Thank you a hundred times over to our spiritual family at FPCO. Your support has been life-saving, really.

Brenda

Saturday, August 29, 2009

Flat..

That's how I feel. Running on auto-pilot. Did I tell you that Brianna can't have baths anymore? Nor can she go swimming in any body of water. Well, actually she can if we want to end her life sooner than later. Sounds crazy but the one common denominator in all three major "blue" spells was that they happened within 10 minutes after a bath. When Jerry said after the second one, no more baths, I was like what? That's ridiculous but actually it's not. When Brianna is placed in warm water, it causes her body to adjust to the temperature which changes her blood flow, which causes the heart to send un-oxygenated blood throughout her body, so she is still breathing, but there is no oxygen. Which explains why during the last blue spell, she was breathing from the oxygen tank yet she stayed blue for at least 10 minutes. So now it is wash-cloth baths all the way.

We have enjoyed the many visitors. Here's some pics I snapped. Didn't get one of everyone. Oh well....












Friday, August 28, 2009

Oh So Tired

It's heartbreaking to see how tired Brianna is now. She has been taking cat naps periodically through the day yet when she is awake, she is her usual happy, rolling, sitting up self. Her little body is getting so tired.

We almost got through a night without alarms until 3:04 am....and then today I was on the phone with a long distance dear friend, Martha Bravo (the photograph who has taken the most amazing pics of our family) when Brianna's heart rate spiked to 256. In total shock I hung up on Martha and concentrated on Brianna (with Jerry). It came right down but boy did I feel like I needed a stiff drink after that one!!!

We had a very good visit with our friends Steve, Ibis, Jim, Karen, Vance and Theresa this evening and they brought over a wonderful "comfort food" dinner. Good friends, good food and good times. Thanks to you all!

It's been a very difficult week. Today Jerry had Bri's pediatrician sign the DNR (Do Not Resusitate) form. Learned something new about this. If by chance we were out and Brianna had an episode and an innocent bystander called 911, without us having the original DNR form on us, the EMS would HAVE to do whatever is necessary to keep Brianna alive. We would have no say whatsoever if we did not have the original with us.

I also called the funeral home to arrange for a meeting next week. This stuff is so unbelieveably hard, I guess by blogging about it, it helps me....sounds crazy I know. It is crazy and so very wrong.

Thursday, August 27, 2009

All is Well...at the moment.

We all had a good night last night. Brianna's pulse oximeter didn't alarm not one time...yippee!!! We actually heard her playing with the sweet seahorse light up toy that her friend Maddie brought over to her earlier in the evening. It's the kind of thing that wakes you up from sleeping but ever so lightly and makes you smile with delight because your sweet baby is enjoying life. Thank you Kristen and Maddie for making that possible : ) Hubby is in bed, Grandmother is in Bri's room watching over her and I am waiting for all to go to sleep so I can go to sleep. Thank you to everyone for the many thoughts, prayers and food!!!! I have never been in this position and it feels kinda ackward but at the same time, feels so good not to have to think about meal planning, shopping and cooking. I have new pics but too tired to upload them now. Tomorrow I will attempt that. God has been so good to us. As for a prayer request, pray for no pain for sweet Brianna.

Wednesday, August 26, 2009

Never Say Never

There are many times in ones life that things are put before them and they say NEVER! and someone usually pipes up, never say never. Well, not too long after Brianna was born, Ashley put in to have a tattoo (her first and hopefully her last)) of something to pay tribute to Brianna. We've talked about it many times but kept putting it off. Well, now that Brianna is not doing very well, Ashley asked again....and after deliberation we said yes, ONLY after reviewing the artwork prior to the tattoo. (We have also kept in the back of our minds that she is 17 1/2 and if she got a tattoo now, we would have some say in it, if we waited 6 more months....yikes. Who knows what she might do. So....today was the day and I have to say that I really like it. Later this evening she shared with me that now Brianna will be with her always, somehow the tattoo makes Ashley feel that Brianna is even closer to her heart. Sweet.

Curious?......







Brianna also had a special visitor this evening, her friend Maddie. Isn't she the cutest?!!! She kept reaching over to hug and kiss Brianna.

Quick Update

Brianna is doing good. The oxygen has made a big difference; giving her comfort. She episodes continue from one extreme to another. Sometimes they are the super-high heart rate; blue spells and then other times, the extreme low heart rate. This morning at 3 am it was the extremely low heart rate. We have learned that it at those times she is experiencing a Bundle Branch Block (google it, easier to understand). Several hours later she is back to "normal".

Thank you again to everyone who is sending emails; texts; notes on Facebook and comments on this site. Although I don't respond to each one of you, your thoughts, prayers and kind words do not go unnoticed. Thank you from both Jerry and I.

My momma is here in town now. My sister Judy brought her. A super big thank you to her. Everyone knows in times of sadness and distress, it's always good to have your mom around.

More later.

Oh, I posted another blog below, thank you May.

Brenda

Monday, August 24, 2009

Plagerizing again...LOL

Once again Vera's mum, May, had something on Vera's site that I just HAD to copy and paste. Hope you don't mind May. God's blessings to your family.

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

The Day is Ending Better Than it Started

At 3:15 am I woke with a start, looked at the baby monitor and something didn't feel right so I went to Bri's room. She was restless, rolling back and forth, moaning a little bit. When I picked her up, she was warm, clammy, sweaty. Her oxygen level was good but I noticed that her heart rate was climbing and climbing and climbing and although she was just laying in her bed, she was breathing like she had just finished running a race. The monitor alarms when her heart rate reaches 160, well, it alarmed, I pressed the silent button (works for 60 seconds), alarmed again, silenced it again, alarm, well, that is how it went for quite some time. By the second alarm Jerry had joined me in her room. We were giving her oxygen but that did nothing to slow down the heart rate. There we are sitting in the dark, on the floor, holding Brianna, praying, praying, praying that if it is her time, take her quickly and without pain. After an hour of the three of us on the floor, two of us obsessed with the numbers on the machine, the third being just trying to slow down from the "race", we negotiated. I laid down for an hour while Jerry kept vigil, then Jerry slept while I kept vigil. After several hours of the high heart rate (into the 170's) Brianna rested.

We have kept the oxygen on her continuously since then. There were several times today when it appeared that she was starting to have an episode but then it subsided.

Thank you to the many friends who came by to visit with us today. We feel blessed that God has given us this time to prepare (yeah, right, huh) and for our many friends and family to visit with Brianna while she is still here on this earth. She continues to be a happy, smiley little girl. God has been so good.

On another note, wonderful news. We have often talked about the idea of starting a non-profit organization to help families like ours, receive respite care. Sadly, there are too many families who don't qualify for any government/organization programs to help families cope with situations like ours. We plan to change that. Our organization is: Brianna Gives Hope. We will be posting more information as it developes. Many thanks to those who helped us make it a reality. We are looking forward to our first Golf Tournament and Motorcycle Poker Run.

Anyway, Brianna is in bed, I am watching her on the monitor and listening to her babble (while I also listen to my husband snore...lol. God bless that man. My heart breaks for him. His only natural daughter, and he has to watch her die. Breaks my heart.

The oxygen has given Brianna new strength. For how long we don't know but we will take whatever we can get.

Here's Brianna on her swing last week. Oh how she loves the wind in her face.



Goodnight.

Saturday, August 22, 2009

Comfort Care


Brianna and Grandpa Botts several weeks ago


Looking all pretty in my mom-designer hospital gown


Momma Kathy loves me....and I love her

We are home from the hospital. Met with the cardiologist today. Brianna's pulmonary hypertension is so severe that there is nothing more that can be done in her particular case. We have chosen comfort care at this time. Brianna will be on oxygen to help alleviate the tightness in her chest. Of course we don't know what God's plan is at this time but we do know that God has a plan for every single one of us and the amount of time we will be here on this earth. Faith. We must continue to have faith. As I have said before, we continue to be grateful to God for allowing us to be the caretakers of Brianna for this time. I think I can rightly boast that God must be proud of us for how well we have taken care of her because he has continued to allow her to bless our lives.

Brenda, Jerry and Ashley

Tremendous Sadness

It is with tremendous sadness that I let everyone know that Brianna is in the hospital again. Yesterday she turned blue again. Just started having problems getting enough oxygen, I immediately hooked her up to her pulse oximeter and her blood oxygen levels were at 61 (should be 100), got the oxygen going and even with that, her levels wouldn't increase. She was moaning and trying to breath, turning pale and blue. Jerry was home with me at the time, we continued with the oxygen hoping the episode would pass but after 8 to 10 minutes we called 911. When the paramedics arrived, they took one look at Bri, saw the blood oxygen level, and the oxygen and her little blue face and bolted us out the door into the ambulance on to the hospital. They were preparing to intubate her in the ambulance when her oxygen dropped again but thank you God, her levels came up.

We were in the ER for a while and then she was admitted. Today we have found out that her pulmonary hypertension is extremely severe. I have noticed in the last month that her heart has become larger due to having to work extra hard to push the oxygen into her lungs. The first indication of a problem was the bundle branch block that happened last week. We know there are meds for hypertension but the problem is she needs a cardiac catherization before the proper dosage of meds can be administered or they could be fatal. Last week her cardiologist told us he could not do the cathe. We are now meeting with a new cardiologist but the fear is that the procedure would be very high risk and she would not survive it, that is even if we could find a cardiologist who would agree to do it. Even if so and she survived it, how much time would the meds give her to live? Then we have to ask ourselves if we are being selfish in putting her through this? We want her here, we want her to stay with us. You can't imagine how hard this is.

We finally allowed ourselves to really look to the future, a teacher from the school would start coming to the house in the Fall, and when she turned 3 she would be going to school, we ordered her a wheelchair, I've been planning her Halloween costume. There are so many photos I still want to take, places we want to take her.

Please pray, pray, pray for just a little more time. Just 5 minutes more.....

Thursday, August 20, 2009

Ahhhhh.....help is on the way.

Oh, I am so looking forward to tomorrow, or should I say later today since it is 1:27 am. Why am I still awake? Because Bri is and she threw up not to long ago so I want to make sure she is asleep before I crash. Anyway, back to later today....I have TWO, yes TWO volunteers coming to watch Brianna. One is a volunteer from our church, Cassie is her name. She has pediatric nursing experience and is going back to school for her masters degree. The other volunteer is from Hospice, she is also a nurse or actually a retired nurse. Either way, I'll take both of them. It was coincidence that they both were available only on Thursday this week but heck, I didn't want to miss the opportunity. What will I do with my time? Hmmmm.......will let you know later.

Saturday, August 15, 2009

Looks are Deceiving

Looks are deceiving and what I mean by that is when one looks at Brianna, they probably see a "special" child but they also see a "healthy" child. "Healthy" is far from the truth. Every second of every day that Brianna continues to breathe is a gift from God. And now, more than ever. How do we do it? We live each and every day to the fullest. Really. Today I had soooo many chores to do but guess what, I sat on the floor with Brianna and sang songs, danced and played. Held her as close to me as I could, breathing in her scent. The chores could wait. She couldn't. I took her outside and pushed her in her swing. Took lots of smiley photos (but can't locate the cable to connect camera to computer right now....tomorrow, hopefully) Brianna is just like me and her dad, she LOVES fun, crazy things. Her favorite on the swing is to go round and round.....it's hard to be sad when you look at her smiling, happy face. We are so blessed.

Thursday, August 13, 2009

Ups and Downs Continue

After Brianna was born our life as we knew it completely changed. For a while we were on a horrendous roller coaster ride that seemed to level off for a while. We felt like we were flying "under the radar". No more. This last month and a half has been quite stressful. Brianna has turned blue three times which means three hospital stays, 3 EKGs, 2 EEGs, 3 chest x-rays, not to mention other tests. The latest episode was this evening. Now we are up to 4 hospital trips in 6 weeks. The past couple of days Brianna has been lethargic and very sleepy and she has been very pale. Today, after an outing with Ashley, we came home and put Brianna down for her nap, at which time we had noticed that her coloring had been off for a couple of hours. So, after coming home and laying her down, we hooked her up to the pulseoximeter to measure her O2 and heart rate. O2 was good but for the first time, her heart rate was 68-75. Not a good feeling for us. Normal rates are 105-110 with a sleeping rate in the 90's. I continued to monitor the rate for over an hour and it stayed low. Too low. We started to become quite nervous. I woke her up and tried to get her heart rate up but as soon as it went up to 100 or so, it immediately dropped back down to the 70s. We were very, very worried. This low heart rate thing is new to Brianna and to us.

Background: After turning blue last week when a Ph Probe test was being administered, the hospital ran some tests. Yesterday I received a call from the Pulmonologist that was very upsetting. The tests administered last week show extreme pulmonary hypertension in Brianna's lungs. We were advised to meet with the cardiologist immediately. The Nissan Fundoplication procedure we had hoped to have done (to stop the reflux coming up and flowing into her lungs) cannot be done now due to the severity of the pulmonary hypertension. At least not until a cardiac catherazation is performed. I then called Brianna's cardiologist and heard heart-breaking news. The cardiologist told me directly that he was sorry but there was nothing else he could do for Brianna. I felt like the rug had been pulled completely out from under me. Where do we go from here? Just sit and watch our daughter die a slow death from her body's inability to draw enough oxygen due to the high pressure in her lungs? Here it was, the moment we have heard about from other T-18 families, doctors reaching a point to where they feel there is nothing else that they can do. Is it because he does not think she would survive the cardiac catherazaion and does not want the burden of her death....I don't know. All I know is we now are at a place where we truly have to decide when enough is enough. How much do we put Brianna through? Are we being selfish? What is her quality of life at this point? What will it be in the next month? Do we find another cardiologist, etc. I could go on and on.

Decision: Meet with a new cardiologist at a new hospital, meet with Brianna's entire team of docs and go from there. I wrote the above posting late last night but wanted to re-read it today when I wasn't so tired and emotional. Today, Brianna has been her usual smiling happy self. We found out that the low heart rate was ok. It is associated with heart disease. It might happen again and it might not.

Saturday, August 8, 2009

Just a Quick Note

We returned home Friday evening around 6 pm. Yesterday ended up being a very productive day. Usually we go to Florida Hospital (which we like) but the doctor who ordered the Ph Probe is associated with Arnold Palmer Hospital for Children so that is where we were for the last couple of days. It was good to see different doctors and to hear what they think is going on and what we should do. One doctor in particular, Dr. S was absolutely amazed to see Brianna. She is the oldest Trisomy 18 child he has ever seen. And what a show she put on for him. Goofy, silly, rolling around, sitting up, babbling, the whole 9 yards! He was mesmerized. We ended up doing another EKG and EEG, chest x-ray and a stomach emptying procedure (formula and a dye and put into her stomach through her G-tube and she laid under a scanner that recorded how long it took for her stomach to empty. She laid there an hour and a half, smiling, clapping and laughing at the many cartoon stickers on the scanner. She is so darn adorable.

We will get the results on Monday. We are still on the path of doing the Nissan Fundoplication but we also want to rule out other problems while she is in the hospital. As my husband says, it would be frustrating to do the Nissan only to find out it was something else causing the blue spells.

Here's a picture of Bri getting all wired up for an EEG. She was so patient.


After getting the wires connected, her head is wrapped to keep them in place. I HAD to add the bow.

Thursday, August 6, 2009

Good News, Semi Bad News...Which one First?

Good news: spot on Bri's neck does not appear to be MRSA. Must be a bug bite. Whew. Semi Bad news: we went to the hospital for the Ph Probe, which is supposed to be a no-big-deal procedure but not for little Bri. In her nose and down her throat went the thin tube and about 8 minutes later, Bri started turning blue. I think it frightened the Endoscopy nurse more than it did me. So, out came the tube and in came the doctor, nurses, respiratory, etc. After getting her back to pink and rosy, it was decided to cancel the Ph Probe but they still want Bri to stay overnight for observation.

Where do we go from here? Not 100% sure but we are talking with Bri's pediatrician and the doctors here to come up with a plan. It is very possible that we will proceed with the fundoplication procedure and hopefully that is what is needed to stop the blue spells although no one has been convinced 100% that reflux is the culprit.

Wednesday, August 5, 2009

Too Much Going On

I know that I have been needing to post but to be honest I have been so very tired. Let's see, where do I begin, so, we drove home from Pensacola after getting an oxygen tank for the "just in case Bri turns blue while driving home" and I must say during that drive I decided that I HAD to contact Hospice again. Not because I feel her life is ending soon (oh, how I hope not) but because I need the services they offer before I lose my mind, really. What a God-send calling Hospice has been. The team that we were assigned to is the Yellow team (my favorite color) and oh, what a wonderful team it is. Bri's nurse, Kara, I felt such a connection from the moment she walked into the room. Then there was the Medical Director, who remembered Bri from the first time we had signed up for Hospice, he was so happy to see her, just the look on his face, the way he talked, he is so proud of our little angel pie. And today I had the opportunity to meet Elizabeth, the social worker, with Hospice. We clicked like nobody's business. I feel like God has personally picked this team for us. Thank you God.

But moving on, we haven't had any more "blue" spells. We are scheduled for a Ph Probe tomorrow at Arnold Palmer Hospital, it requires an overnight stay. There will be no sedation involved. Only monitoring by nurses. Big relief. There is just one very BIG thing that might keep this from happening. Like life has not been crazy enough, on Monday night before putting Bri to bed I noticed a pink nickel-sized spot on her neck. Me being the dork that I am, I retrieved the flashlight and magnifying glass to check it out. Didn't see anything that resembled a sting or bite so.....fast forward to Tuesday morning. OMG....the spot on Bri's neck is now the size of an orange, inflamed, and then inside of that, the size of a quarter, red/purple. Off to the pediatrician we went. One look and he is concerned that it might be MRSA. Big, big, big scare. He immediately put Bri on antibiotics specific for that and topical ointments. We have to return in the morning for a follow-up. I am so hoping it is a bite of some sort and not MRSA. If it is MRSA, no Ph probe tomorrow. Not sure if the antibiotics will work on MRSA or if she will have to be hospitalized for stronger meds. Will post tomorrow and let you know.

On another note, Ashley visited with us for a day and a half. What a nice visit we had. I miss that girl.

Sunday, July 26, 2009

Released

We have been released from the hospital. First off, I was incorrect about Bri's oxygen level being low this morning...it wasn't. Bri's toes are so small that the sensor was loose and once the nurse came in and taped it on securely everything was good. The doctor who came in a little while ago said that she suspects reflux. So, I will thicken up her formula with rice cereal and be extra careful with the oral feedings. Life goes on, one day at a time.

A big thank you to Cathy, Trish and May for their postings of Brianna on Annabel, Alyssa and Vera's blogspots. Thank you to everyone who emailed Jerry and I personally for your thoughts and prayers. We are so thankful for all of you.

Good Morning

We hope to be discharged today. Brianna has not had any breathing issues since our stay although her oxygen saturation level tends to be in the low 90's. This morning the OS alarm has been going off because it has been fluctuating between 86 and 93. Yesterday she had an EEG (the first) to check her brain waves and to see if the breathing issues are being caused by seizures. No report back yet on that one. They also performed another EKG and it appeared the same as the one that was performed in Florida Hospital two weeks ago.

I posted a new video yesterday of Brianna taken by Jerry on his iPhone on our YouTube channel, BSBotts. As usual Brianna has been happy-go-lucky the entire time.

Thank you to Grandmother, Aunt Sonya and Uncle Joe, Aunt Judy and Uncle Paul for coming to visit little Bri while in the hospital.

I haven't been crying as much, the good Lord has reassured me that she is in his hands, the best care of all.

Thank you God for one more day.

Saturday, July 25, 2009

Here We Are...

Back in the hospital again. Early evening Brianna had another episode with breathing. One minute just fine, the next, turning pale, yawning for oxygen and becoming extremely lethargic. On top of that we are out of town visiting my family in North Florida. Off we go in the ambulance to the community hospital and 8 hours later transferred to Sacred Heart Children's hospital in Pensacola. After spending 5 hours in their Emergency Room, we are finally in a room, complete with hospital crib, twin bed AND recliner. Wooooo Hooooo. Maybe we can get some sleep.

Don't really know what to tell you about what is happening because we really don't know. Last week we thought it was pulmonary hypertension, then we were told that it was not, now we are being told that it is. Personally, the diagnosis makes sense giving Brianna's behavior.

I need to go now because I am tired beyond words. Jerry is already snoring away, and, I just don't know what to say about our little Bri. We so hope and pray that this is not the beginning to the end. We just love our little Sugar Bear so much and the thought of her not being here with us. well, it must makes us cry.

Of course I will post when we know more.

Thursday, July 16, 2009

Going Home

We are very happy to be going home although the reason for Brianna's episode is still unclear. After the cardiologist released her last night, we thought for sure it was an acute reflux attack but this morning the GI showed no reflux. I have to say that we know she has reflux, always had. They have been administering Pepcid so perhaps that is why they didn't see any during the procedure. Anyway, the plan is to adjust the pepcid dosage, thicken her formula and hopefully that works. There is no doubt that God continues to keep Brianna here for a reason and we will continue to give her as much love and attention as ever.

Brenda and Jerry

I feel the need to post something

although I am utterly exhausted. Monday a week ago we took Brianna for a routine checkup to her cardiologist. All were surprised including the doctor when it appeared that Brianna had pulmonary hypertension, ultimately a death sentence. We were waiting to meet again with the cardiologist after he met with other specialists to review Bri's findings on the EKG. In the meantime, Tues evening, we had a scare, and a big one. Bri was good one minute and the next, with no warning whatsoever, she coughed a little cough and suddenly couldn't catch her breath, it was like something was stuck in her throat but I knew there couldn't be anything there because I had fed her by mouth approx 40 minutes earlier, then given her a bath and was sitting with her on her bed, getting ready to dress her. So after coughing for a little, her little mouth started to turn blue, then her face, then her tongue and the inside of her mouth, her eyes rolled back in her head and all I could say was no, no, no, Bri, you are not going to do this. Yeah, like she was doing it on purpose. She continued to cough and went back and forth between blue, gray and ashen. When I realized she might not pull out of it, I called 911.

Jerry and I both were very worried that this proposed pulmonary hypertension was the beginning of the end for Brianna. Bottom line, even though I would love to go into more detail but am so very tired....late today (Wednesday) after another EKG by her cardiologist, lots of prayers by family and friends, there was no indication of hypertension whatsoever. Bri has been tentatively diagnosed with acute reflux, which can be fatal if not treated. Apparently, acid refluxed up and back down into her lungs and essentially, she was drowning in her own stomach acid. Tomorrow morning an upper GI will be performed confirming the reflux. There are medications and also a procedure that can be done to help this problem. Will let you know more tomorrow. For now, zzzzzzz's....time to catch me some. Good night all. Oh, Happy First Birthday to Alyssa. You go girl!!!

Monday, July 6, 2009

Too Long


Brianna and her daddy reading the paper together. Too cute I say.

Yes, I have waited too long to post but as Annabel's mum said, when things are going good, we just keep going and enjoy the moments.

I don't know what got into me about 3 weeks ago but all of a sudden I decided it was time to move Brianna out of our bedroom and into her room. The delay has been because our house is a split plan and her bedroom seemed sooooooo far away. So, while my husband was away on business, I moved Brianna into her room. The first night, she slept like a dream, me, awake all night...constantly checking the monitor to make sure it was working. Brianna has adjusted very well. She seems to sleep better and longer in her room. Although Jerry and I miss her presence in our bedroom, it was time to make this move, for all of us.

Oh, and I also found out that Brianna will have a school teacher coming to our house in the Fall to work with Brianna. Isn't that great?!!! But what is even better is that when Brianna turns 3, 3? we still can't believe it....she can attend elementary school, yeah....I know. Wow, huh. It would be the regular school hours, Monday through Friday, 8 to 2, but, she's not going to go 5 days a week all day, maybe 2 days a week, half a day, to start. The class is staffed with a nurse and appropriate teachers/helpers to assist with special needs children. How exciting...Brianna attending school.

And here's a couple of pics for you. Using my camera for the father/daughter pictures makes me want to get it out and use it a lot more.




And some more pics of when we were in Chicago at The Hancock Building. The weather was beautiful, in the 80s and very little humidity. Brianna was enjoying the sunshine as you can see. I love these pictures. She is so happy and gorgeous and her dad is so honestly happy with her in his arms.



Loving the Sunshine On My Face

Thursday, June 18, 2009

Too Cool



Technology is amazing. Right now, this very second, Brianna and I are onboard AirTran, IN THE AIR, on our way to Chicago to meet up with Jerry and spend the weekend. So far Brianna has been cooperating, only threw up once so far....lol, the flight rules are once a child is over 2 years old, you must purchase a seat for them. In Brianna's case, she is so small that I could hold her but rules are rules so we (or should I say I) made it to the airport (thank you Kathy for driving us) with lots of "stuff", I did a practice pack up the stroller as much as I could without flipping it, last night but forgot that I was also going to have to carry the car seat. Whew....made it. My wonderful husband who does his best to spoil me made sure we got to sit in first class, so, I am also enjoying a bloody mary, I am on vacation, yes? Anyway, Have to say the car seat was a good thing, Bri is strapped in comfortably and is happy at the moment. Already took pics and some video, will work on downloading those next week.

Thursday, June 11, 2009

Special Child

Baby Vera's mom posted a really special poem on her blog and it is so nice that I wanted to share it as well.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

Having a child with special needs has been a phenomenal experience as well as a life-changing experience. Not only in our every-day experiences, but also in our spiritual lives.

I challenge you to the next time you come across someone with a special needs child, don't look the other way, smile and say hello. I can't tell you the number of times when people realize that Bri is different, they look the other way to avoid us. All it takes is a smile. Believe me, I already know we are very different.

Monday, June 8, 2009

More Thankful Than Words Can Say

As everyone knows, we are more thankful than words can say for Brianna still being here with us and healthy (as far as we know). but let me tell you what happened last night and then today. Jerry's parents were over last night and his father mentioned that he had noticed a lump on Bri's neck.....immediately all I could think is how did I miss this? It was a lump that could be seen only when she was in a particular position and well....to say the least I couldn't believe that I had not seen it. So, today we had an appt with her GI doctor as a follow up, the wonderful news we heard from him is that SHE LOOKS FANTASTIC!!!! According to a Trisomy 18 weight/height chart, she is ABOVE the 50 percentile for weight and height. Let me remind you that trisomy 18 children remain small, we came across a 19 year old (yes, I said 19 year old) who was only 58 lbs and her height matched her weight.. that is when I stopped worrying so much about Bri not continuing to gain weight.

So, then we went immediately to her pediatrician, whom I LOVE. Dr. Chaban has been the most incredible person, I just can't say enough wonderful things about him. Anyway, after checking out the lump on her neck he said that it was a "palpable" lymph node and nothing to worry about. All I could think of was cancer...which was a possibility, but he said no and that she looked and checked out to be in tip-top shape. Oh, what a relief and you can only imagine. FYI, she now weighs 20.4 lbs and is 32" long. God, we are so incredibly blessed. Thank you.

On another note, bless Bri's dad's heart, Jerry, or should I say his back....his back went out last Wed. while in Texas. He flew home and thought it would get better in a couple of days but last night I had to take him to the ER. They said it was muscular and prescribed some pain meds. Well, today it wasn't any better so we made an appt with his orthopedic for first thing in the morning. He is so tired of crawling (literally) around the house. And to be honest, I'm tired of it too!!!! LOL. I sure hope something can be done about it in the morning for his sake.

Good night all.

Sunday, June 7, 2009

Heartbreaking News

In an earlier post I asked for prayers for Laurie, her husband and Lil Toot being delivered last Tuesday. Sadly, Lil Toot was born into heaven Tuesday night. I can't imagine the sadness the parents must be feeling. I also find myself wondering why her, why are some of these little angels destined to live longer than others. Why is Brianna still here yet others only have minutes or hours? We'll never know the answer. I only ask that you pray for peace for Laurie and her husband. Continued prayers too for Annabel who is recovering from surgery. Brianna is so much like Annabel, all smiles and full of fight. God Bless Them, all of them, those still here with us and those sitting in the lap of Jesus.

Thursday, May 28, 2009

Prayers, We Need Prayers

This morning I was contacted by a woman, Laurie, who is due to give birth to a little girl with Trisomy 18 within the next week. Coincidentally, they have planned to name her Brieanna. I ask for prayers for strength for the mother and father, this is their first child, I ask for prayers that Brieanna will be strong and here on this earth for quite some time.

I ask for prayers that Annabel, who is scheduled to have surgery next week, will come through it with flying colors. And I pray that her family, and Annabel who has such a GREAT smile, will find the strength to be strong. I am sure it is a scary and difficult time for them.

I also have to say thanks be to God for allowing our Brianna to be here with us for 24 months. Such a long time to us but in the whole scheme of things, such a short time. We are so very grateful.

Say extra prayers, please.

Thank you.

Saturday, May 23, 2009

I don't know

I don't know if the new video (on our YouTube channel) is playing on computers other than a Mac. If it is, someone please let me know because if it is not, then I need to figure it out.

Anyway, alot has happened the last couple of weeks. We were invited to attend the Down Syndrome Support Group and all I can say is thank you, thank you, thank you to the moms there who made us feel so welcome. Finally, a place where we fit in. Brianna was beside herself when sitting on the floor with the other children. She was clapping her hands, shaking her head in happiness and kept giving me the look of "it's about time you found me some friends!!". Anyway, a big thank you to the DS group for bringing us into their group.

We also finally made it up to North Florida to visit my family and have Brianna's 2nd birthday party. Ashley also turned 17 (yikes!) while we were up there and we celebrated her birthday by spending the day at the beach with my sister Sonya....I felt like it was my birthday too!!!



Here are some pics of Brianna before the trip, playing in her tub pool outside. She loves the water.

Friday, May 22, 2009

Haven't Figured It Out Yet

I spent HOURS trying to upload a video that I made on my Mac. Obviously I was not successful. Still trying to figure it out but in the meantime I did upload it to our Youtube channel. There is a link below left. The banging noise was roofers working on my mother's house.

More to come and hopefully I can figure this out.

Tuesday, May 19, 2009

Oh boy...or should I say oh girl....

I only have a moment but wanted to let everyone know for Mother's Day my WONDERFUL family gave me a video camera that is compatible with my Mac computer and I have been a video-ing fool!! Can't wait to share but no time today. I plan on updating Bri's site tomorrow.

Thursday, May 7, 2009

Standing Tall



Look at me...standing big and tall. Last week Brianna's PT, Ms. Bea, said she thought Bri was ready for a "stander" and after explaining it to me, I could hardly wait for today to come. So....here she is, loving it. No fussing, no whining, actually smiling and playing with her piano from her favorite aunt (Aunt Sonya!). The reason for the stander is for Bri to put weight on her bones in order to make them stronger. Next step will be a walker. Can you believe how big she is getting?

Saturday, May 2, 2009

A Day at the Park



What a nice outing we had today at the park.  The weather is just right.  Not too hot yet but close.  As you can see, Brianna is her usual happy self.  Finally, here's a picture of our new puppy, Belina.  Wish Ashley could have been here but she has gotten a job (her first) so she is at work today.  We missed her for the picnic.

Of course I saved the best picture for last. Once again, I swear I didn't pose Brianna. Actually I was reading when all of a sudden I noticed they were laying the same with their legs crossed. Grabbed my camera as fast as I could.

Isn't that the cutest thing ever?!!

Thursday, April 30, 2009

Chillin' That's our Bri
We found this chair last December at Babies R Us and it has been perfect for Bri.  Her own personal just-right-size chair.  She looks like such a big girl when sitting in it properly, then she starts wiggling around and ends up like this.  Honestly, I didn't pose her.  She has been well and getting so big.  35 inches tall.  Wooo.  

Friday, April 24, 2009

Here we are...

Friday night and feeling much better.  Still not 100% but doing fantastic.   Waiting for daddy to come home since he has been out of town most of the week.  He always seems to get BIG SMILES from Bri upon his return.  I know she must miss him when he's gone as do both Ashley and I.  Still trying to schedule Brianna's birthday party with my family in North Florida.  We are all looking forward to a little break.  I hope to get it scheduled soon.    Please continue to pray for Annabel.  Things are better but she is still having some problems.    

Tuesday, April 21, 2009

I have so much to say.  Since coming home from the hospital, it has been interesting.  One day Brianna is on top of the world, the next day, sleeping most of the day, next day, smiling, happy and awake, next day....lots of resting.  Slowing she is getting better.  It is amazing how much the rotavirus took out of her.  Today we have an appt. with the gastrointerologist and nutritionist.  Since Bri's last appt with them in Oct. she has not been able to pass that 21 lb mark and right now she is below 20 lbs due to being sick.  She's starting to look skinny since she has continued to grow taller so we need to figure out what to do to get her fatter.  Oh, another interesting thing is that since being home, Brianna is sooooo hungry for food by mouth.  Last night, or should I say this morning, she had me up at 2:15 a.m. feeding her bananas and strawberries.  Did the trick, full tummy and back to sleep she went.  


Resting with my Daddy

I must say thank you for the prayers for Annabel.  She is feeling much better.  God is so good.

Have to blog about our older daughter, Ashley.  This past weekend she went to the Prom with Jordan and had a fantastic time.  Proms have changed so much since I went.  Theirs was held at Disney and the theme was "Night in Morroco".  She came home on Cloud 19 (no typo).  Here are a couple of pics of Ashley and her date Jordan.


All together now, ahhhhhhhh