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.

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!!!

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

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.

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.

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.

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.

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.

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.

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.

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.

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?

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?!!

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.  

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.    

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

Prayers for Annabel, Please

Our Sweet Annabel is in the hospital and not well.  I ask everyone to pray hard for answers to what is going on with her little body right now and a fast recovery and prayers to keep her family strong.  To learn more you can visit her site at: 

http://annabelgrace.blogspot.com/

Praise God

Praise God and we mean it from the bottom of our hearts.  Brianna came home today from the hospital.  We still have a good 7-10 days before she is over this virus but oh how good it is to be home.  

I can tell you now that we came so close to losing her on Wednesday.  It is unbelieveable how quickly dehydration can take someone down.  When we walked into the peds unit, Brianna was white as a sheet and completely limp in my arms.  They took one look and before I knew it there was a team of medical professionals there and they  immediately took Brianna up to the ped. intensive care unit.  Her heart was working overtime due to the dehydration and because of that and her petite size, it was next to impossible to get an iv in.  Thanks be to God, it was not her time to go and we have her for a little while longer.  Makes me smile with such gratitude.  

Tomorrow we will celebrate two years of life.  Might not sound like much but when told initially it would be less than 24 hours....her life has been an eternity.  We have been so blessed.  So, tomorrow, please say a prayer of thank you for this little life that has been such a blessing to so many.  

 

Good night.  

Brenda, Jerry and Ashley

oh, and our new little puppy dog, Belina.  Pics to follow.  

Not Going Home Today

Just a short note to say Bri is not going home today. Throwing up again and not tolerating her feeds. They are putting in an iv as I type or trying to put one it. Her veins are so small it takes someone really, really good and lucky. They have tried both feet, both hands, her neck and her head. Gave up and called in someone else to try. Last resort is a central line in her groin. Will see. Right now I think we will be here until Sunday. That is ok. God has a plan and if that's it then that's it.

Jerry is staying tonight with Bri and I plan on going home and getting some sleep, if I can sleep.

Wanted to attach this silly pic taken by Jerry with his phone. She got the glasses in an Easter Basket today. Crissy looks pretty fancy in her red glasses (BabyBeBlessedDolls.com) too.