Loving Arabella

Bell’s Week

2012-01-22T13:44:00.002-06:00

Things are going pretty well. She continues to have these random periods of tachycardia and irritability. But other than that, she is doing great!

She adores Music Therapy – tons of pictures, how do I choose which to include – she is so cute!

OT – working sensory. After thirty minutes, she actually touched the paint!!

Playing around before bed

Saturday the girls went for a bike ride and came home with some friends. I love that the first thing they do is introduce their friends to Bella and Joy. And I love that their friends play with my babies!

Jessi teaching her friend how to sign “apple.” Playing outside

Bell’s Week

2012-01-15T15:21:00.000-06:00

Music Therapy – Bella loves it! She loves the instruments!

PT – she still hasn’t been feeling well. So we kept it low key. Lots of stretching for that stubborn patella that doesn’t want to be in the right place! Yes, it left bruises, BUT she was able to fully extend that leg with it in place!

Group therapy with Joy - Joy is a good model for finger-painting! Fun for Joy. Too gross for Bella!

After Jessi’s 5th Grade Concert, she gave Bella and the nurse a concert. Bella being pushed around for her stander time – more fun that way!

Outside play – Bella LOVES to be outside. She begs all day. She throws huge three year old fits when she comes in.

Playing with Joy – she loves this toy. I wish it didn’t eat up batteries so fast!

2012 Begins

2012-01-08T11:19:00.001-06:00

Bella has a virus, and thankfully, it’s not RSV! Being viral in nature, she just has to get through it. No new meds, just lots and lots of PRNs.

We had no nurse for five days straight. Five days with a sick (and grumpy) Bella. Lots and lots of holding, reading, and Signing Time! Grateful for big sister!

Looking so big these days!

OT is working on Play-Doh. Bella’s got a little sensory issue there. Thankfully OT makes it fun!

The Rest of 2011

2012-01-02T13:35:00.001-06:00

Bella has spent the rest of 2011 being the most spoiled three year old around!

Just call her the pretzel!

Watching too much TV, swinging when she is clear enough

And crashing in the living room!

We’ve had lots of call outs – tis the season. The good thing about that is lots of good, quality family time!

Bell – you had an awesome 2011! I am so proud of you! Here’s to a fabulous 2012!

Christmas

2011-12-25T14:29:00.001-06:00

We tried a new hair style for the family Christmas Eve party. (thanks Cammie)

She was able to stay with us for the whole party – I was so surprised. During our family’s dress rehearsal (haha), we were all laughing so loud that she started to cry and I had to take her to her room. But she did fine for the party when everyone was there. So grateful! She has come so far!

Christmas morning!

Merry Christmas Bella! We love you so!

Mama!

2011-12-24T11:41:00.001-06:00

She said it!!!

(thank you Passy Muir valve!)

Bella’s Time

2011-12-23T15:35:00.001-06:00

Blowing bubbles with Speech

Pulling to stand! (ignore the feeding pole right in the middle of the shot!)

PT thinks she needs to learn to crawl up stairs. Ugh. She wasn’t interested (terrified would be the right word) until I brought out the Signing Time jewel case for her to chase. It’s all about motivation with Bella.

A beautiful Saturday day we brought her outside. She adores the outdoors! Sleeping on Daddy

I’ll go anywhere if you bring the ipad! Swinging!

Waiting for Cardiology and watching, what else?, Signing Time. We got a great report from Cardiology. ECHO unchanged. Heart looks good, right ventricle slightly enlarged – common for kids on vents. Continue to watch those valves. She said her heart looks good enough for working on her vent weaning.

She’s been doing really well. I am grateful. Then she pulled a little episode and scared ten years off of my life. Emotionally, I’m not as prepared for the crisises as I used to be. She has been doing so well, that I move to that happy stable place and then wham! she reminds me not to get too comfortable there. I think that’s why all this weaning talk has me a little freaked. I feel safe where we are. I’m afraid to take that step forward. It’s always two steps forward, one step back. And I don’t want that step back. Anyway, I‘ll put on my big girl face and move forward when it’s time. Thankfully, it’s not time yet.

So what did she do? I’m still not sure. She decanulates at least once a day right now. It’s no big deal. We pop it back in and move on. But this time there was a crazed, unfocused, not there look on her face and tons of bright red blood and mucus coming out of her mouth. I did everything I was supposed to do, and I got her stable and breathing. But it was so weird and scary. Besides the not breathing, it was the panic she was showing that really scared me. Compared to what so many kids go through every day, it was nothing. Oh well – the rest of the week she was happy and well. I can’t complain.

Here’s hoping for a great Christmas for Bella and everyone!

Bella’s Week

2011-12-11T09:06:00.001-06:00

Just like everyone else, she is a junky, wheezy kid. Tis the season!

She just loves her CPT!

Huge!!! A first drink! (There was about a drop of water in that cup, but still!!!) Wahoo!

Eating carrots…she gets so excited and then eats maybe a teaspoon. Oh well, it’s a start.

Then feeding therapy turns into play time

Hanging out with sister! Love that smile!

She’s been doing a lot of sleeping of late – I blame all of the congestion! We are slowly increasing her feeding rate in her G during the day. Wow – I forgot how much she doesn’t like change. For the second time in two weeks, the ER was mentioned for this bloated tummy. But I vetoed that. I stopped her feed, put her on pedialyte, gave her some meds, and hoped for the best. Poor thing. She worked through all that gas again. I hate that each tiny change plays havoc with her system. We are back to distended, but not hard. We’ll figure it out together Bell.

A new experiment. I haven’t been that pleased with her homebound teacher. So I’ve decided to do a lot of supplementing. I am so excited! I spent the weekend gathering stuff for us to do school. She is such a sponge. More books and time together? Sounds wonderful!

A digesting post (not GI) part 2

2011-12-09T09:11:00.001-06:00

And then there is this machine….How I love this machine. It is our lifeline. Pulmology says most kids like Bella are off of this lovely machine by now. Yet here we sit, with a set breathe rate of 20. I have all of her settings memorized – because they have never changed. Not since we got on it in 2009 (except ICU days, but they don’t count). So more tests in January. But I’ve been thinking. Is my love affair with this machine holding her back? Weaning is pulmology’s goal. It’s a great goal. Truly, I would love to see her off too. No, I don’t relish that my daughter is alive because of portable life support, but I am so very, very grateful that it’s here.

What’s the problem? Pulmology wants to push her. I want her to lead. This is the problem we are having – an incompatibility with our approaches to weaning. I feel like pulmology sees two lungs and a heart. I see progress being made in all aspects of her life – school, mobility, feeding, speech, life in general. If we push her too much, she lays in bed and breathes. That is not a life. Quality of life is what I am after. That machine gives her the extra strength to have the energy to do the things that make life worthwhile. But that is my opinion. In my head she is a complete package, I can’t let the focus become solely her lungs, or all the other parts of her life would slip away. But maybe she could just push through it and get off. At what price? How much energy will that take? How sick will she get in the process? So many things that doctors have done to her have come with a price with long lasting consequences. Why can’t we just let her be and let her lead the way? Am I holding her back? I am afraid to find the answer.

A digesting post (not about GI)

2011-12-09T08:55:00.001-06:00

Our PT came by and we measured Bella for one of these – a Riftin Gait Trainer. Thrilled would be the word to describe how I feel about this! Ignoring what Ortho and Physical Medicine and Rehab have told us, she does her own thing. She wants to be mobile. She wants to be out of her room. She wants to go. It’s going to be a long road, but this girl will move on her own power in an erect position.

I am still searching for the right ortho for her. I have to find someone who will see Bella – not all the machinery that comes with the package. I got a new name this week. He is outside of TCH, and I’m totally fine with that.

This weekend one of my other daughters broke her wrist. We took her to an orthopedist that goes to church with my sister. He’s really great. While I had him face to face, I asked about Bella. He and his OPA were pretty amazed by her need – not as simple as I was hoping. But he gave me the name of (in his opinion) an excellent pediatric ortho. He said with something this extensive we need a really good pedi ortho. So we’ll make the appointment and we’ll hope.

In the PTA’s opinion we have to build up these legs and get her up before she gets bigger and so out of portion that it become very, very difficult for those little legs to support the increased mass. So we work hard. Three times a week hard.

I’ve been wondering what my motivation is here. Is it just to prove the doctors wrong (again)? I don’t think so. After examining myself, I think it’s because she wants mobility so badly – and I want her to have anything she wants. There are so many things I can’t fix, but I can fight for this one.

Our PT and our PTA trying to figure Bella out….which muscles are weak, which muscles are tight, are there any joints that aren’t lax?

This, on the other hand, does not have me thrilled. This is a Dynavox. Assistive technology to help Bella communicate. What? No, Bella signs. Bella sometimes even says a word or two. She’s amazing with her signing, in my opinion. I thought that was the direction we were going. Speech brought this up. We did an eval and this came up. She was hesitant to talk to me about it. She thinks it will help Bella. I’m having a hard time swallowing this one. I don’t want her communicating through a box. I am excited it’s out there for those who need it, but I thought we were headed a different direction. Oh Bella. What do you need? Where should we go on this one?

Bella’s Week

2011-12-04T18:58:00.000-06:00

It has been too cold to go outside and swing, even for a second. So this just has to do. Not what she wants, but at least she’s swinging.

Music Therapy Evaluation – I’m so excited about music therapy! She loves music. I think this is going to be great. She responded well. After all the paperwork is done (January probably), she’ll get a half hour once a week. Yeah! She loved the drums and the guitar!

Therapy – note to self – no bangs on this kid!

Can’t you just hear it? “Why do they put me in these positions and leave me? Who cares if it’s a cute picture?”

Had to blog about this – this is sister’s 16th birthday party. Those are ten teenagers hanging out, eating pizza, playing games right next to a ventilator and feeding pole. And not one of those kids even blinked once. This is Bella, Becca’s little sister, right in the middle of the party!

In other news – GI visit. Increased the rate to g feeds during the day. Basically no growth, a small loss actually. Looking at the DS growth chart, she should sit here hovering just under or at 10 kilos for the next year. There isn’t a lot of growth expected between three and four years of age.

I asked about getting her off of Peptamen Jr and onto a blendarized diet. She has very hesitant to do that. I can understand her position. Technically, Bella is Failure to Thrive. They want to control every calorie and fat gram in her diet, not leave it up to me. I get that. But she came up with a compromise. There is a commercially available blenderized diet called Compleat. We are going to switch over to it in January. She wants to do the change when we are in the hospital so they can monitor her. Sigh. Not looking forward to this hospital stay. Oh well. I am a little worried because while it is gluten and lactose free, there is milk protein in it. I don’t know if she will tolerate that or not. She did say that a lot of kids outgrow their sensitivities by three. I don’t know. A lot of kids outgrow their vents by 3 too and we are still here. I don’t know how her GI tract will respond to “real food.” She’s only really done well on Peptamen. I can hope. I do think it’s a step forward toward a more natural diet. We’ll see what Bella wants to do in January.

Oh, and Pulmonology called in an antibiotic this week. Why? Based on her trachael aspirate, she is growing this funky bug and they wanted to treat it. I called back. We haven’t had a trachael aspirate since October. Yep, from that culture. Are you serious? Makes me crazy. How I wish Bella could have a pediatrician. One person that was responsible (besides me). Not her PCP, her Pulm, her GI, her Endo, her Cardio, plus the others. One person. Because things fall through the cracks – like now. And we are taking meds two months later.

The Rest of Bell’s Week

2011-11-27T12:30:00.001-06:00

Thanksgiving, when you don’t eat by mouth, isn’t that thrilling. But the family – that part is fabulous!

She loved her cousin Michael!

Grandma and Becca holding time was great!

She is feeling better! Her playful cuteness is back!

Japanese Gardens

2011-11-24T07:29:00.001-06:00

After Bella’s appointments at the hospital, everyone meet us down at the Japanese Gardens. We had a picnic and took pictures. I foolishly left all the vent batteries at home. Luckily there was an outlet next to the bathroom, so while everyone enjoyed their lunch, Bella and I “re-charged our batteries!” After an hour we had enough juice to take some pictures with Bella. When we got to the van, the vent started beeping, “Batt empty.” We consider ourselves to be very blessed.

Pulmonology Visit

2011-11-23T19:14:00.002-06:00

Home from pulmonology. Doctor doesn't know why she is still on the vent. He admits that she does her own thing and doesn't follow the rules. She should be better. She should be off the vent by now. Is this a PEEP thing? Or are her lungs just really that damaged? We are going to wait till January (thank you my family says) and admitted her for a bit. We'll do a bronch and some tests. He'll go back and scour her medical file. Maybe, just maybe we can figure something out. Hoping!

School, Vents, and the Beach

2011-11-20T08:04:00.000-06:00

Bella’s first day of school! Wow – it was intense! Calendar, Alphabet (all 26 letters signed), colors, shapes, counting. A solid hour of instruction. I guess I had stressed enough that Bella uses a lot of sign to communicate because her teacher came in signing everything – and this amazing kid signed right back. And with signs I didn’t even know she knew!

She was one tired girl when that hour was over (read, not breathing, just riding the vent). But she rallied later in the afternoon, for a little swinging time!

Wednesday she had an eventful day. PT came and after such a promising session last week, we all thought we’d repeat. Ah, no. Miss Kaci, our nurse, kept her on the vent all morning so she would be well rested and put her on the HME for therapy. Bella just wasn’t ready, after a little bit she just stopped. She just stood there in that walker breathing. I was watching her so closely because she looked so different. Then she asked me to put her back on the vent! She put her little hand on her trach repeatedly. I asked her, “Do you want to go on the vent?” And she responded by patting her trach repeatedly again. OK babe. You call the shots. Therapy was over and we rested. That kinda freaked me out. She has never asked to be put on the vent before. She knows what she can and can’t do. I just have to listen to her.

Grandma came by and bought her birthday present – two new Signing Time videos! Thanks Grandma!

later on the girls were dancing. Usually she wants to “dance” with them. That night all she could do was watch. But I did pick her and bounce with her a bit!

Bella was getting sick. By Thursday night we knew.

That weekend was our Family Reunion at the Beach. Oh the debates – to take her or not to take her. Nursing had already been cancelled, so it was me at home alone with a sick Bella or take a sick Bella to the beach. We ended up taking her. She and I stayed in our room a lot of the time. Her fever broke on Saturday. We did a lot of suctioning thick green secretions and CPT in that rocking chair. But I had a great view!

Saturday afternoon she got to go out into the living room and watch a movie with the cousins!

Lots of sleeping. Look at the camera Bella!

Signing Time! We quickly took her out for the family shot. She was kinda purple, but she is in the picture!

Tis the Season

2011-11-13T21:06:00.001-06:00

that I am grateful for:

Xopenex
Inhaled Steriods
Oxygen Concentrators
Night nurses
Ventilators
CPT

The weather is crazy, so it follows that Bella’s lungs are crazy. Oh well. Grateful we have all of these things to keep Bella home and OUT of the hospital.

Isn’t this fun? It was a birthday present from Miss Kaci, her nurse. Those are melted crayons.

Wonder of wonders!!! PT caught her on a good day and look at the miracle! With the PT and nurse following behind with all of the equipment and me out in front with the ipad showing Signing Time, Bella propelled her way three times around the house!! It’s all about motivation. It’s time for a gait trainer! I am so proud!

A rare moment off the vent, grab the camera. My two sweet sisters:

Monthly labs. We brought along the ipad to keep us occupied. and distracted.

She was supposed to start her homebound school this week, but she had too many fevers, so we had to cancel. Hoping this is a good week! (and that her teacher is nice and loves her!)

Happy 3rd Birthday Bella!

2011-11-06T14:50:00.000-06:00

I’m still so very proud of each and every one of your birthdays! You have amazed and inspired me for so long now, my love. Happy birthday to our Bella!

We got her a phone – no phone line, but we’ll keep it charged. Now she can text and talk, just like the nurses. Hopefully, their phones will be safe now!

She and her sisters loved the ball house.

Gluten free brownies – for me? Are you sure? No flame on the candles, but we sure sang. And then we gave her a piece - and she licked it - just like a lollipop. Cute girl! For someone who doesn’t eat, licking is good.

Aquadoodle

How we love you Bella! You are beautiful and amazing. I have been thinking of your birth family more than normal this week. I hope they know you are loved and cherished beyond belief. I love you big girl.

All over the place week

2011-11-05T16:23:00.000-05:00

Bella’s Halloween Lollipop. Halloween when you are on a vent and very easily get over stimulated is best spent at home. Happy Halloween baby girl!

Therapy – we decided since she is almost three, we would try Mat Man. She has been listening to her sister from the other room! She knew just what to do! We were so impressed! '”Hi! Mat Man!”

Kisses for Daddy

Our very last ECI appointment – so bittersweet. Miss Kari has been in our home for three years now (between Joy and Bella). She will be greatly missed. She has taught the girls so much!

Graduation robes

An early birthday present from Miss Kristen, her nurse

I was all over the place this week. I have been from ready to file a lawsuit against our school district to successfully completing her ARD. Her goals have been made. And we are ready for her teacher to start coming next week. Incredible the emotional rollercoaster this week has been as we have prepared for her third birthday.

She is doing great!

2011-10-30T13:21:00.001-05:00

Bella, little Bella. How you are shining this week!

She is getting big – next week she will be three! She is a big girl and she knows it. This trach/vent thing is just slowing her down! She wants off. She wants out of her room. She is ready to live. Too bad her lungs didn’t get the memo! Her nurses and I are wracking our brains trying to come up with ways of entertaining her/ teaching her/doing anything with her to keep her busy and happy.

Let’s go for a walk!

Checking out the Jack O Lanterns Her impressions? This is kinda gross! I’ll pose for a picture, but put me back on the vent quick.

Let’s Swing and watch TV with Daddy

Showing my cousin the very cool Ipad and in the walker for PT

I will lean for Signing Time! Her PT says whatever it takes!

More swinging and playing in the toy box with sister

Then Saturday came and we had no nurse. Which was probably a good thing, because they probably wouldn’t have liked what we did. Our neighbor has a Halloween Carnival every year – and this year I brought Bella. Everyone was so surprised to see her! And off the vent! I kept my distance to keep the stimulation down and we went slow. After a while, she was so tired, breathing super fast, really pulling, so we went home while everyone else enjoyed the rest of the carnival, BUT she went! And she saw. And she enjoyed! It was worth all the medicating we had to do when we got home.

Love ya Bell!

For all you football fans: (Thanks to Daddy!)

Bella’s Week

2011-10-23T14:24:00.000-05:00

Two girls – one nap nanny Therapy time

Reading with sisters Being introduced to sliding

What? You want me to let go? This is fun? Are you serious?

Watching TV in the big room If I can’t go outside because I am wheezing too much, I can still swing inside on the Johnny Jump Up!

The Power of the iPad!

What are you doing?

She’s Back!

2011-10-16T08:06:00.001-05:00

Her nurses and I are astonished! She recouped so quickly! Welcome back smiley girl!

Swinging – she was delighted to go outside!

The joy of discovery – a slinky!

Watching TV in the big room! Wonder what she is signing? She is definitely concentrating on Miss Rachel!

Checking out a lunch box – so cool, and look, I can sit on it!

Laying in bed with sissy (it only lasted a moment, but it was so cute!)

OT – playing with a lollipop and the mirror

I am so delighted with myself!

Almost two weeks of no weight bearing had it’s effects, no weight on that right leg again. Oh well, if that is our only set back from this sickness, I’ll take it!

From OT, wearing her inline passy muir valve. She hasn’t done that in a long time. She was having so much fun playing with her voice.

The Mighty Warrior (Wonder)

2011-10-13T14:01:00.001-05:00

In the not so distant past, in a land near the blue waters of the Pacific Ocean, was born a beautiful and mighty warrior. To her birth she brought a whole lot of extra fluid, a few holes in her heart, an extra chromosome, and a triple dose of determination, drive, and the will to live. She determined that each and every day was a battle worthy of her fullest and best effort. She placed that motto firmly in her mind and began. She faced death – and conquered. She meet and charmed everyone she meet. They sensed inside that little warrior her unquenchable spirit. She faced down death again – and came off victoriously once again. She patiently waited as her naysayers listed the things she couldn’t and wouldn’t be able to do – and with patience and perseverance, she started erasing items from their list. She is the warrior, determined every day.

Bella amazes people that work with her. “She is a pistol.” “She is feisty.” “She is a fighter.” Yes, I smile, yes she is. I smile when it takes me and three other grown adults to hold her down for monthly blood draws. (I also cringe – I hate that we have to do this to her.) It’s that fight, that drive that keeps her going. It’s that drive that has enable her to make it to this point. To my Bella warrior! The definition of perseverance!

Fetalis Hydrops (wonder)

2011-10-13T10:35:00.001-05:00

(the first pictures we ever saw of Bella – she’s about two months old)

I’ve been thinking. Why didn’t I realize how ill Bella was? I mean I knew she was ill (see here), but why didn’t I have any idea how hard her battle would be. I had communication with her mother for almost her entire NICU stay. Well, maybe I didn’t want to believe she was. Maybe. Maybe I saw that beautiful face and fell hopelessly in love. She was a baby in a NICU. But when I look back over the emails, I see how she was improving. Just like my other five little girls had done – they all had NICU stays and they all turned out just fine. She had the heart problem, but we had been told multiple times that once she was repaired, she’d be fine. Really, though, I don’t think anyone knew how badly effected her lungs were until after her heart was repaired. As evidence, my email to Bella’s mother after getting back to Texas:

We went to the doctor this morning. He is calling the cardiologist for us to set up her first appointment at Texas Children’s. He says that once she has her surgery, she should be a pretty normal little girl. That was wonderful to hear. The girls are all loving on Arabella and having a wonderful time.

Of course, I knew that she was born with fetalis hydrops. Her mother had told me, but I didn’t understand it. All I knew was that sweet little girl, who I thought would be fine, needed a family. I was happy to make her part of mine. When we got home from California, I told myself that I was going to go through all of her medical records from her NICU stay. I tried. I needed a dictionary for every other word. I quit and just used the discharge summary given to me for the doctors here at TCH. I recently looked through them again. The sad thing? I can understand them now. Now that I understand so much more, I have been researching fetalis hydrops again. I don’t have any pictures of Bella as a newborn, but I have googled “fetalis hydrops image” and it isn’t pretty. I have learned that of those diagnosed prenatally, only 20% survive. Of those 20%, only 50% will make it through the neonate period. It helps me to understand why her lungs are so damaged. I have had so many questions of why at almost three is she sitting here on a vent. I’m beginning to discover some of the answers.

Emotions and Thoughts and Thoughts and Emotions

2011-10-13T09:30:00.000-05:00

Be forewarned…Bella’s birthday is rapidly approaching which means I am reminiscing and thinking and feeling a lot of different emotions.

This post is mainly about grief.

I’ve just re-read every email I ever got from her mother. How I treasure those! I hope she is well. I can’t imagine what Bell’s birthday must invoke in her and their family. Today I wish we could sit and have a good cry together.

I’ll let you in on a little secret about adoption. Adoptive mothers aren't allowed to grieve. You may not believe me, but it’s true. I was actually told to my face once, “But why are you ____(can’t remember the word she used)? You knew. You chose her.” Yep. We chose her. We chose to bring this beautiful little girl into our lives. But no. How can anyone really know anything that will happen to a baby? I have a friend that adopted a beautiful healthy little girl. She died of cancer before she was old enough to start Elementary School. “But you knew.” I knew that she was a sweet baby with Down syndrome. I knew that her heart needed to be repaired. I talk to several doctors who told me that once she was repaired, she’d be fine (they were still telling me that as we went home from the hospital after her repair.)

I didn’t know that she would take our lives and totally, meaning 100%, change them. Our little homeschooling family became a public school family. You can’t home school when Mom lives at the hospital. This overprotective mother who was involved in every aspect of everything in my children’s lives had to hire a nanny and resort to occasional calls home to “see how things were going.” A million things are different now. A few years of my children’s lives are gone.

Am I complaining? I don’t think so. I think I am acknowledging. Life is filled with change. Lots of it. It is never static. It is constantly evolving and changing. As a child my life changed often. We moved a lot and my Mom did a great job keeping life normal and safe for us. As I remember it, though, I would just start over again each time, like walking through a new door. Here we are now, no looking back. As I get older, I want to stop and turn around and glance back through the door and pause to remember. But a part of my heart feels that as betrayal towards my Bella. I’m trying to use my older, more experienced voice to teach my heart that acknowledging pain, suffering, and difficult times is not weakness nor does it demonstrate a lack of love. Instead it allows my heart to heal from the realities that hurt and were painful and to more fully embrace life – all of it. Life is not always happiness and bliss.

I had a moment yesterday. Bella was in the living room on the vent sitting on the floor. She was being so delightfully ornery that she made Jason and I laugh. And at that moment a very sad feeling streaked across my heart. A feeling that we had been denied this – this fun, this energy, this normal fun toddler moment for so long. Playing with her sister. Keeping us laughing. That was what I thought I was choosing when we chose Bella. Instead we got a medical education. We learned about death and saying good-bye. We learned about her fight and drive to survive. We learned about “the system” that drives me crazy – hospital protocol, clinic protocol (each of the millions of clinics that we see has their own), nursing protocol. We learned about therapies, crash carts, and ambulances. We learned about doing the best thing for a child. In the process our hearts have been smashed, torn to pieces, and ripped to shreds. Sitting here three years later, I do believe that I am a better person for all of this. I know more than I ever wanted to know about some things and not nearly enough about others. Through it all I have been protected and upheld by my Father and His Spirit. I really cherish some of the worst days with Bella because they were the days when I felt Heaven’s help physically.

When Bella’s mother cried as she said good-bye to Bella and when she talked of Bella’s beginnings, I could sense her grief. I could see her sorrow. But I didn’t feel that I could touch that kind of pain. I could respect her and love her, but that is all. Now it is different. Now we could sit and sob together. I could weep and not feel that I’m not entitled to this pain. I have now walked the road of sorrow. I am know acquainted with grief. As Bella’s birthday approaches, I grieve the idyllic infancy she should have had. I grieve for the pain free years of discovery and toddlerhood. I grieve the pain we all, both her biological and adoptive families, have faced. I grieve.

Bella’s Week

2011-10-09T12:31:00.001-05:00

Slowly, but surely…..she’s getting better.

The nurses have been asking for bangs and maybe even a hair cut. Her hair was down past her diaper. It’s so thin and fine. It was always in her face. So in a rash moment, I did it. Oh…..I wanted to cry with the results. I keep telling myself that it’ll grow! She has a cowlick right in the front – who knew? But now it has tons of body. I think I just have to get used to it!

Missing Bella?

2011-10-04T18:27:00.001-05:00

Well….she’s sick. She’s got croup and tracheitis. She’s on antibiotics and the dreaded steroids. Bella and steroids don’t mix well. And despite the 5 liters of O2 – we are home! (Her birthday gift to me!)

No pictures of Bella – use your imagination! We will all be much happier when this is behind us.

Bella’s Week

2011-10-01T08:52:00.000-05:00

She started the week off sick, she got better in the middle of the week, and then finished the week off sick.

Playing train with sister…her hair is amazing, crazy and wild.

Her favorite activity is going into the living room and watching on the big TV.

Playing with Mama – I was trying to take a picture of us in the mirror – didn’t work so well, but we had fun!

Her CT scan

From Signing Time’s Move and Groove,Bella’s version of Shake, Freeze, and Sway:

Bella’s Week

2011-09-25T14:42:00.001-05:00

Monday and Tuesday we were down town for appointments. She got her flu shot and it made her grumpy and yucky for three days. Poor thing. Glad to see her back to normal. Bella’s anterior fontanel is still not closed yet and she’s almost three. Her doctor and I have talked about it a million times. Well, her forehead is starting to get a cute little ridge – just right there in the middle above her nose to her hairline. So I have affectionately referred to her as my baby Klingon a couple of times! With this cute little development, we have a CT scheduled for next week and then a consult with the neurosurgeon. Craniosynostosis is suspected. We’ll see. We talked about wheezing. She just doesn’t seem to stop these days. Her thyroid med had to be upped again, but the fabulous news is that now that we are (almost) three, we only have to go to endocrine clinic every six months, instead of every three! Yeah! So nothing big at either appointment – yeah for uneventful visits!

How she loves to lay in her Nap Nanny with that one leg draped over the side– and her beloved water bottle. Although not very green, she sure loves to hold them!

“Sissy is reading to me, MOM!” (can’t you just see it in her look?)

Bella in the bath

“Signing Time”

Bella’s Week

2011-09-18T08:08:00.001-05:00

Sit to stand

“OT made me sit in this new high chair – I don’t like it. I want my old high chair back!” (That is my interpretation of that look!) Reading, though, that makes me happy!

Surrounded by toys Swinging!!! We had no nurse and Jason and I went outside to check on the garden. Bella let me know by throwing her body toward the swing set that she wanted desperately to swing. It’s been so long since she has been outside. She loved it!

Sitting with sister

Her knee braces came in!! She is checking them out before the patella guard is put in – and then standing. I have such high hopes for those braces!

A couple of videos:

She is so determined:

Bella’s Week

2011-09-11T20:34:00.001-05:00

We have had terrible wildfires here. The air quality has not been good. I have been so worried about Bell, but really, she has done much better than I had hoped. Some oxygen. Not as much off the vent time, but overall, I have been impressed. Yeah Bella!

Bella in her walker. She arches her back and propels forward – oh well, whatever works!

Now that she is in her big girl room, she is closer to the noise and bustle. For Labor Day Daddy put up some doors – more privacy, less noise during sleeping time.

Hanging out with sister and reading a book (see the video below)

No nurse Thursday or Friday. So she had to go to Bec’s ankle appointment and to drop off Joy at school. She was adorable and flirting, of course! Even on the vent for bath time some days. Oh well.

Waiting for Joy to come home from school

Hanging out with Grandma – showing her the “put in” skills with Grandma’s watch and two cups. Hanging out in the kitchen during Aunt Mandy’s birthday party.

Her attempts at standing. Really, if you watch it close, she’s trying to figure out how to sit down and get her PT to read her this book. Silly girl!

Bella’s Week

2011-09-04T11:59:00.002-05:00

Reading…

Tea Time….we are working on pretend play

Therapy, therapy, and more therapy

Coloring

GJ Changes can wait till Signing Time is over – at least that is what Bella thought. The medical staff and her Mama disagreed and she let us know in no uncertain terms just how rude she thought we all were!

I can’t believe it but we are starting the paperwork/testing phase of getting ready for school. (She will be homebound, but it’s the same process) I have filled out forms. They just aren’t made for kids like Bella. Half of the questions I had to leave blank. When you spend the first 9 months of your life in an ICU setting, things are different. We have our first meeting next week. I am so afraid of how she will look on paper. I tell myself that it doesn’t matter, but it does still effect me. We are also going through this process with Joy, her older sister, and while expected, reading an objective report on her abilities and weaknesses is hard. The person is not there. It’s so cold. I’m afraid of Bella’s report. It’ll be fine, but my heart will be tender.

And if that wasn’t enough, we are having nursing problems. People have lives. But when their personal lives effect their work to the point that it effects their professional judgment, we have a problem. I had to let a nurse go – and that is very hard for me to do. I have a guilt ridden personality, so these things are hard for me.

We are now on our second nursing agency and this week the agency made me mad, and so now I am questioning in home nursing altogether. I am trying to be calm and let things blow over, but I don’t know. When you have in home nursing, you lose part of your freedom. Bella had a temp of 97 and a runny nose. The nurse called the agency and the agency called me to tell me to call the doctor. (They did that as a courtesy because they know I like to be involved and do the calling.) Excuse me? I call the doctor when I think it’s necessary. I know that nursing agencies have a limited scope of practice. They have limitations on what they can and cannot do. But seriously? 97 is not a temp and a little runny nose? I don’t think so. The Plan of Care is broad enough to cover that. I was furious. If she is sick, yes I will be the first to call the doctor. I don’t take well to being told what to do. Especially like that. There is an implication that I don’t know what I am doing and I need to get out of the way of the professionals. Sigh……Maybe I’m being overly sensitive. The little girls are being tested. Joy was labeled Mentally Retarded this week. There is a lot going on. But I have spent the weekend pondering if our family could survive without strangers in it 24/7. I don’t know. The freedom would be nice. But then I think about my friend Lacey. (she has no nursing) I’m trying to take a step back and realize that I am in an emotional place at the moment. We’ll see what happens.

Bella’s Week

2011-08-28T14:23:00.001-05:00

Hanging out…Starfall and Signing Time . She learned the sign for movie this week. We are in so much trouble!

Pulling up and learning to color!

The little stinker – the PT builds towers that she has to stand up to knock over. Well, she did that for a while, then she got tired. She sat there on that little stool and surveyed the green box. Then she reached out and lifted the lid – mission accomplished, towers down. I was laughing so hard! Don’t work harder, work smarter, right babe?

Playing with her sisters – some of her looks are so funny!

Hanging out with Daddy Playing in the living room

Sammi had a special thing at church so we decided to bring Bella. It was only her third time there. Such a big girl!

Pretty good week. We are trying to use the Passy-Muir valve more. She tends to huff and puff a lot while on it. I can’t figure out how that is good for her Pulmonary Hypertension (probably isn’t). Thursday she decided she was done with working so hard. We stuck her on the passy and walked into the other room and she turned purple. OK, babe. Message received. The vent is our friend again. So grateful we have it. Breathing is tricky and hard work. Got the memo.

On a side note – some people talk about blue babies. Bella doesn’t do blue. Purple, yes. Gray, yes. Not blue. That’s OK. We all have our favorite colors, right?

Sometimes it seems like Bella is telling me, you handle the breathing and I’ll progress and blow away everyone’s expectations, just don’t push me on the whole breathing thing, ok? Sweet girl.

Bella’s Week

2011-08-21T10:03:00.001-05:00

Cuddling with her texting sister Reading

Showing off her cute hair Getting kisses from her sister

Talking to Kris, our good friend Being adorable

Bella’s room was our former formal dining room. Well, she has outgrown her space. So we painted the former formal living room (aka Bella’s storage room/piano room) and turned it into Bella’s room. And her old room will be her storage room. Bella comes with lots of “stuff!” She likes it a lot better – there is more space to get into things and to pull off the vent!

This was Bella’s opinion of the two trips we had to make down town this week. Sweet girl. We had an abdominal ultrasound. Looking forward to the results of that one. Between that and the multiple samples going into the lab, we are hoping for some answers to our tummy issues of late.

Second trip was to Pulmonary. I think we have decided that her need for the vent is more of a PEEP issue than an oxygenation issue. She said the passy muir valve would help to maintain PEEP whereas the HME will not. Maybe why we can’t seem to do HME trials for very long. Bella doesn’t like the Passy. It feels different and she panics a little. But armed with this new knowledge, we tried it again and talked her through the adjustment period (so grateful she is getting older and smarter). And she has done beautifully! Yeah for you Bell! They want to do another bronch and have her stay overnight in house so they can test some things out on the vent. It’s a plan. I love plans!

My noisy Bella – she likes to hear herself – we like it too!

A Fun Week

2011-08-14T07:25:00.001-05:00

Our nurse thought these pants made a great hat – hmmmmm, says Bella

Playing with sisters….Bella is getting to bored of little baby toys. Time to bring in the big girl stuff! (You can tell we hadn’t had our bath for the day!)

Working on that standing!

Our family’s trip to the beach

Hey Mom! So excited to come along!

On the ferry My six girls all together!

Hanging out on the couch at the beach house……………so tiring!

Playing on the computer with Sammi…………………..yes?

I will stand up! I will! Outside with Daddy for a second – outside!

Reading with Lizzy………………………..back to my book

Her two greatest loves are Signing Time and books. Combine them into one….the Signing Time books that I ordered for her came this week. Wahoo!!

Bella’s Week

2011-08-07T10:49:00.001-05:00

Some of the many faces of Bella:

PT: I want to cheer. I want to scream! This is my daughter, Arabella Turpin. She is standing! Yes, my vent dependent daughter. The PT’s hands are not touching her. They are there for support. She is leaning against the ball – but she is standing! I have a couple of doctors that I would love to send this picture to. See!!! I told you so!!! But….that’s not nice. I still want to do it!

We need a knee brace. Something to support the muscles and ligaments above and below the knee. Since I can’t get any from a doctor, I bought two elbow braces from the store. They aren’t perfect, but they give her the sensation of support for those poor knees, and the result is magical!

Being the good Mama that I am, I actually followed the advice of the PM&R doctor and asked the orthotic to come out and measure her for AFOs (which aren’t what we need – argh!) She came out, saw my beautiful babe working with PT, looked at the order for AFOs, and said…..she needs a knee brace. AHHHHHH! music to this Mama’s ears. So she measured her for one. I think it’s this one. Since PM&R doesn’t think she is ready for this step (tell that to my daughter), we are going to see if her PCP will sign the order for the knee brace. Wahoo!!! So grateful! And grateful that we did what we were told and went and saw the docs and followed their counsel – otherwise we won’t have known about this brace! Yeah!

Another huge first – blowing through a horn. Another “this should be impossible for you” moment this week! Wahoo girl!

Playing with the fam – look at those knees – we have worked so hard on that!

Visitors –she is so curious about new people! Reading with Jessi

My beautiful Bella – determined to be her very best. We are trying to keep up with you love!

Love ya!

Crazy Week

2011-07-31T07:39:00.001-05:00

These two girls love each other so much!

Bella is such a happy little girl. Caught in the bath!

Haha! Bella got ahold of my phone! Happy day!

Bella took two trips this week. One to Physical Medicine and Rehabilitation and one to Grandma’s farm. The trip to the farm was a nice break from the house. She and I spent the entire time there on my Mom’s bed just sitting around and breathing. It was 100 degrees outside where everyone else was fishing.

Our trip to PM&R - I’m still torn about whether or not it was a total waste of time or not. Yet another doctor to stand there and stare at her knee, then look at the x-rays, then hand us off to someone else to see, but make sure and come back in four months.We’ll see. She wants us to go back and see ortho again. Since I refuse to return to the first one we saw, I have to go through this whole process to see a new ortho. (insert angry phone call) Couple that with lots of days and nights with no nurse, and it’s been a long week. There are times I want to wrap up my sweet girl and run far, far away. But we will keep at it. We are running into this idea that kids on vents don’t walk. They ride in wheelchairs. Well, explain that to my baby who wants her freedom. I just need someone to fix her knee – it’s dislocates constantly. Someone who will see pass all the equipment and believe in her like I do. We’ll figure it out babe!

Special Mother

2011-07-29T16:46:00.001-05:00

The Special Mother

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...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

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," smiles God, "Could I give a handicapped child to 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 wears off, she'll handle it."

"I watched her today. 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 her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think 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 will know it!"

"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 if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

I read this as a teenager. It made such an impact on me that I remember where I was sitting in my parent's living room, and I have a terrible memory - so that's saying something.

At the time, I didn't understand the last line. It's means that the mother is a saint. She is wonderful, yada, yada, yada. How I interpreted it is "give the woman a mirror, so she'll see herself and her expression and remember to smile or maybe some days, force herself to smile."

Then I was given it in the long ICU stay by one of the Attendings. He is a really sweet man. He is of German heritage and looks a lot like my Dad. I instantly trusted him. He was implying the first interpretation - You are awesome, Mom. Keep it up!

I don't know about other mothers, but I still really think my original view is more in lines with reality. Like today, with no nurse, five therapy appointments, no access to the outside world what I need is the mirror over Bella's bed to remind me to smile. This is the face my baby sees day in and day out. There should be smiles and love in my eyes for this beautiful girl. She deserves it!

Bella’s Week

2011-07-24T11:19:00.001-05:00

Hanging out with the family – eating her toes and showing us how flexible she is!

Bella sees it – Bella does it….Oh, you are finally letting me hold one of these, well…let me just send a few texts real quick.

And I think I can totally do this myself, thank you nurse.

Water in my tray? OK. How fun!

And we said good-bye to Miss Earsel. How we will miss you, Miss Earsel. She has been with us almost from the beginning. We wish you all the best!!

Wednesday Bella decided we needed a trip downtown. Two chest x-rays and three vials of blood later, the doctor still doesn’t know what is up with you Bell. I guess you just like breathing at 70 – 85 breathes per minute with retractions on the vent. That’s fine. We’ll just watch you even more!

The only thing that came back from her blood work was an elevated platelet count – which we always get. That may be caused by chronic inflammation. I am so hoping for answers and ideas from Physical Medicine and Rehab this coming Friday. Hoping we can figure out what your legs are doing or why they aren’t doing what they are supposed to be doing. Fingers crossed for a good week!

Bell’s Week

2011-07-17T21:47:00.002-05:00

How these girls love each other! Bella’s favorite thing is to be off the vent and in the living room with the family. This week she could handle breathing on her own for about thirty minutes and then she had to get back on.

Sister rocking her to sleep and looking at the ads with the nurse. She is so funny! I’m have high hopes for this new nursing agency – still doing paperwork and interviews/orientations for the nurses coming with us to the new agency. I had a long talk with the Director of Nursing. How I hope things go well!

Bella’s Week

2011-07-10T18:27:00.001-05:00

Therapy shots:

This is amazing – she has never sat up on a stool before – ever! She would panic and freak unless she could feel our arms holding her tightly, but look! It just all clicked! Not just sitting there, but reaching and coming back to the upright position. Wow, girl!

Using the stethoscope. I think I can do that! Thanks so much!

Cute video of Bella and her sister

Silly video of Bella

OK – that was all the happy stuff. Feel free to stop reading now.

Warning: whine ahead. You have been warned.

During Speech, we feed her some Stage 2 Corn and Rice, and then suctioned some of it out of her trach. Great! Combine that with the fact that we can’t get liquids thick enough to not aspirate on and her Budda belly and her toxic gas and I have made the royal decision to make our beautiful girl NPO for a month. I figure if it’s Celiac acting up that in one month’s time everything should have cleared out of her system and we’ll know. I’m hoping it helps her poor tummy. All of this gas and bloating isn’t normal. All that won’t help her aspirating, but it’ll help. Aspirating is dangerous. We’ll see.

I’m going crazy – slowly, but surely.

Two years ago we left the hospital, went for our first ambulance ride, and came home.

I was so excited, but I struggled. I struggled with having strangers in my home. Reality is I still struggle with strangers in my home. I was grateful to read this post. It’s wonderful therapy to know you’re not alone.

I feel so guilty. I am so grateful for our nurses (well, most of them). Truly. Some are like family. And Bella is beautiful. We adore her. But she is intense. She needs a lot of time and attention. Her care is extensive. My other children would have no life if the nurses were suddenly gone. But you see, on the inside of me is a very introverted people – hermit might even be a good word. Having someone in my home, there is no where to go to escape. There are days I spend a lot of time in my bathroom. I feel guilty because on the days I’m not too fond of the nurse, I don’t spend as much time with Bella. I have to force myself to interact with her because I also have to interact with the nurse. I have constantly supervised visits with my own child. I have to follow the nurse’s plan of care versus just doing what my mother’s intuition says (most of the time – I do make exceptions – but that means I have to be ready for a battle, so I pick my battles.) It’s been two years. Two very long years. Every time this discomfort hits, a small piece of my heart dies. And right at this second, my heart hurts.

On the other hand, what do I expect? These nurses come and work in my home for twelve hours straight. They aren’t robots. They need human interaction too. Really, I’m just struggling with a couple of nurses. But I feel trapped. How do you ask someone to please not come back because they stress you out? This is their job. This is how they pay their bills. And they are people. They have feelings. They have hearts too. How do I balance all of this?

Then there are people who have no nursing. And I feel guilty for complaining. (Sorry Lacey!)

Then there is hope. Hope that Bella will get better. Hope that she will be able to be a bigger part of the family – instead of just the sweetheart that we all adore, but who can only come into the living room for short periods of time each day. Hope that she will one day be able to tolerate stimulation so she can be with us for longer. Hope that she will be able to breathe without a machine or eat without a machine. Hope that we can be more normal – and not have nurses. But two years later and we are still here – breathing almost 24/7 through a machine with 155 hours of nursing a week.

What a hypocrite I am! We have a living, breathing (albeit through a machine), beautiful little girl. She is charming and beautiful. She has the cutest sense of humor. She needs help living and we are blessed with 155 hours of help a week. My personal problems just have to be dealt with. For she is Bella and we love her.

My beautiful happy girl!

Tests, Crazy, and Headed back to sick

2011-07-03T18:55:00.001-05:00

On Monday we headed down town for a GJ change, labs and sedated ABR.

Keeping her busy on the long drive down.

A PICC placement was having complications(so sorry for whoever that was), so we got put into a different IR room. Unfortunately, it was a sterile room, so I had to dress up in the bunny suit in order to accompany Bella into the room. I never get to stay for the procedure, but I do get to make sure she is situated correctly and all of her machines are plugged in, suction available, etc. Last time they changed her GJ she was so mad and upset she was foaming at the mouth and her circuit was full of junk. But this time she was happy at the end. Who knows? Maybe it was my fabulous attire!

We did a lot of waiting and looking at fish tanks.

Sweet girl – her hearing is “essentially normal!” Amazing! That is such an improvement. She had mild hearing loss, then sensitivity loss, and now this. Incredible – tubes are wonderful! She will continue to be regularly monitored – the audiologist wants every six months. We’ll see about that. But being on gent and lasix, she is at risk for drug induced hearing loss. So we monitor. But she told me that the loss would start in the high frequency first – so s, ph, th. That is what I’ll watch for.

And finally headed home.

She is so funny. She has learned to laugh around the vent, but it beeps. She gets so silly and crazy at times. I just love her!

She is headed back to sick – yellow/green plug this morning and fever. We’ll see. Hopefully it’s short lived.

She’s Back!

2011-06-26T09:51:00.000-05:00

Yeah for Gent – I love that stuff! Bella is back! That is what all her nurses keep telling me. Yes, the sweet, crazy monkey is back.

She has started eating a little again – wahoo! We have found that she is aspirating on liquids, but she can handle thick food. And she’s getting a chance to hang out with the fam for a little time. She’s isn’t off as long as we’d like, but it’s a step in the right direction!

Bella’s Week

2011-06-19T21:06:00.001-05:00

Started off well enough. Our neighbors came over to play. Bella thought she was wonderful! We were all laughing – she never takes to people like this!

Therapy shots

Bella surprised us all during speech. Not even half way into it, she started signing “sleep, “sleep”, “sleep”, “sleep”, “sleep”, then “bed”, “bed”, “bed.” OK, Bella. We finished therapy right there and she took a nap. We didn’t even know she knew bed. She LOVES Signing Time, and she watches them all the time. I guess she is getting more out of them than I give her credit for!

Well, that nap should have been a clue for me that she was headed to sick. She was sick for several days. Her highest spike was at 103.9, and for someone’s whose baseline is 95 – that’s a pretty good temp. We ended up with every test imaginable – CBC, chem 7, lytes, x-rays, trach aspirate, strep, throat cultures, viral cultures. So far it looks viral. She has been miserable – and there is only one person in the world that she wants. That person is a little bit tired at the moment. The fevers are gone, but the crabbiness and the O2 is hanging around. I think we are headed to well again. Thank goodness.

How Cool!

2011-06-14T07:34:00.004-05:00

This is wonderful!

There are actually seven different camps - how amazing!

Busy Week

2011-06-05T11:15:00.001-05:00

Hanging out with the family:

And then Tuesday came. We still don’t know why or how, but her belly was distended and she was so uncomfortable. We did end up downtown at TCH for x-rays. The ER doc and I read her chest x-ray together. I reassured her that no, she didn’t have pneumonia – she just has atelectasis. She said OK, but was withholding her judgment until the radiologist read her film. Yeah, for us, the radiologist agreed with me (otherwise, it’s upstairs – ick!). Abdomen x-rays I’m not as familiar with, but even I could see that her bowels were distended and full of air. At least there was no perforations or obstructions. So we went home. She just has to pass all that gas. Poor thing.

While we were waiting, we finally caught her doing her “So Cute!” on film. We say, “so cute” and she puts her little hands under her face and grins. It’s so funny!

Home!

Friday we saw Cardiology. We used her ECHO from Easter and it looks about the same. We used her x-rays from the ER which are her baseline. We talked about her chronically low BP and the low hear rate when she is sleeping. They are really too low for someone her age, but with everything she is on, she is good. She was also rigged up with a 24 hour heart monitor. We always get alarms when we are hooked up at the hospital, but they don’t seem to last very long. So we don’t worry too much. We are just getting a good picture of her heart function. Her valves seem to be behaving – good. Her mitral valve is misshapen, it has a cleft, but it is behaving. I asked her whether or not that should be on my worry list (because I had crossed it off a while ago). She said that the longer it goes on behaving, the better (love the obvious!). Sometimes they will act up when the kids become teenagers. So we continue to monitor and hope that all stays happy in there. Her PH pressures were pretty good for her.

Silly girl is talking to her reflection! She entertained herself for a really long time doing this. One thing she doesn’t suffer from is a low self-esteem!

I was talking to our nurse after the appointment. Bella is doing so well that I want to cross things off my worry list. Drop a few specialists, you know? But really she is more like a Diabetic that has her insulin regimen perfectly figured out. The diabetic is still diabetic, just doing well on all the proper medications. That is where Bella is. I, for one, am grateful for all the proper medications!

She, of course, pulled all of her leads off later that day. We goggled how to put them back on! Thank goodness for the internet!

Saturday – we pushed it and she got 30 minutes off the vent. She loved the freedom.

These are from today – watching a new Signing Time (totally engrossed!) And trying to comb her hair after her bath – so smart!

Our Week

2011-05-29T17:48:00.001-05:00

Our baby girl has lived on the vent all week. I sneaked her out one day to swing for a few minutes – she just loves that! Love ya babe!

Definition of a Line

2011-05-22T14:28:00.001-05:00

pictures of the cute girl:

Two days this week we spent downtown doing doctor’s visits. I don’t know why I get so emotionally geared up for these visits, but I do. This week we saw GI, Endocrine, and Pulmonology.

The first two visits were rough on her. We have to switch over to a non-heated circuit to travel. The lack of humidity in her circuit did a number to her, but that day, thankfully, I had a really good nurse. By the end of her shift we had had several treatments and she was doing well again. Doctor wise we didn’t do much, switched around some feeding schedules to accommodate therapies, but that’s about it. It’s also the day we had to deal with the resident that insisted on going down memory lane with us about one of Bella’s hospitalizations. Because that stay was so riddled with medical errors caused by a fellow and unnecessary sufferings on Bella’s part, I don’t remember it is the same cheery light that this naïve resident remembers it in. Hence the question on children’s hospitals in the last post. Anyway. Sigh. It’s the way medicine is taught and practiced, so it is what it is and I have to left it go.

Pulmonology visit went fine – she is almost always on the vent these days. That is not what he wanted to hear. But it is what it is. Every time we go we get a short little plan of what he’d like to do. But lately she has been all over the place, so we get a different plan every time. We are going to down size her trach. We are going to upsize her trach. It reminded me of teaching the definition of a line – you have to have two points and then you can connect them. We never seem to have two visits pointing in the same direction lately. She just doesn’t follow the norm. So it goes back to this is Bella’s life and she’ll write the book.

At church today in Sunday School (Jason and I take turns going to church and it was my turn today) our Sunday School teacher talked about writing rather than just reading. He works at a college. As an educator, he says, they see that if you just read something, you learn. But if you process it and then write about it, your learning goes much deeper. I can put my faith in Bella’s doctors, and I do, but really the only one doing the writing around here is Bella. She is the writer of her story.

If I sound down, I am sorry. It has been an adjusting week. I find I go through these occasionally. Times when I have to readjust my expectations and goals. Being a planner and a thinker is not always easy with someone who wants to write her own story. I have to let go of where I thought we would be and embrace where Bella says we will be.

A therapist asked me this week if I ever question my decision to take Bella. No. She is my daughter. It kinda upset me. I don’t know, but I doubt someone would ask me that question if I had given birth to Bella. But it doesn’t matter to me how she joined our family. She is my daughter. Yes, she is challenging. She is also the most amazing and inspiring person I have ever meet in my life. I love her so very much. And if it’s hard for me to occasionally have to update my life’s plans, so be it. Bella teaches me every day how to be brave, how to have hope, and how to live. I love you sweet girl!

Oh – and in fun news! Bella has learned how to give kisses. She leans in, mouth open, and waits for her kiss. Funny, funny girl!

Quick Question

2011-05-17T06:03:00.002-05:00

Does anyone know of a good pediatric children's hospital that is not a teaching hospital? No residents, no fellows - just doctors that have finished their training?

Bella’s World

2011-05-15T14:28:00.001-05:00

For about a week Bella played around with low grade fevers and sleeping a lot! But she is doing better now. So glad.

Love these sequence shots:

Before I went outside to do the yard, I moved Bella’s rocking chair so she could look outside. She watched us for a while then started playing with the CAUTION Oxygen in Use sign. These pictures seem like such a statement of her life – cut off, isolated, and unable to do so much, but she finds the joy in life.

Bella’s shipment of supplies comes in these great big boxes – it has become a huge playroom for her. She loves it!

Love the window! Hi everyone!

My baby girl

Mobility

2011-05-04T10:05:00.001-05:00

This is how Bella gets around. Crazy sweet girl!

Doing so much better

2011-04-29T12:49:00.001-05:00

so very grateful!!!

Bella’s Week and Easter Weekend

2011-04-26T12:41:00.001-05:00

The week was the same as last week – she was cute and wonderful, playing and worrying her Mama. She discovered this box and we tried to get her to bear weight on her leg and show her how to kick.

I kept having conversations with myself about her health. I hated how hard she was breathing. I hated the retractions. I hated all the sleeping. I hated all the oxygen usage. But I didn’t want to call the doctor. Everyone has crazy allergies this time of year. We were doing everything possible at home what more could they possibly do? But in the very back of my head was this little voice that said if she has aspirated and her pulmonary hypertension kicks in and she dies because you didn’t want to spend some time in the hospital, how are you ever going to live with yourself? Saturday we had a nurse that we don’t normally have. Toward the end of her shift she asked me some questions. She didn’t think Bell was doing very well and did I think she might have aspirated? UGH! To have my thoughts spoken by another was the final straw. We decided we would head to a hospital and get a chest x-ray. She told us we didn’t have to go to TCH. We could go to a local hospital. Ahh….my mind loved that idea. We couldn’t be an automatic admit. I’ll take one chest x-ray to go please! Great idea! I’ll be able to tell the little voice in my head that she didn’t aspirate and I’ll be able to sleep again. Yeah, and if not, at least we are doing something.

Well, it was a great idea except for the fact that we scare people – a lot. We walked in with our vent and all of our equipment. We bypass triage and go straight to a room. They order the chest x-ray and then they about faint.

You will have to be transferred. What? May I see the x-ray? I guess people don’t usually ask that. I tell them it’s not that bad – I’ve seen much worse. But she has infiltration in the right lung (pneumonia). Ugh. (Oh, and by the way, that’s the way her x-rays always look)

We go downtown. We are automatically admitted with our presenting symptoms. Long night – no sleep.

Bella in her prison.

She loves to sleep sideways. Not sure what she’s going to do when she gets a little bigger.

The family came up to see us on Easter. That was a hard day for me.

At TCH they watched her. She stayed on oxygen (up to 5 liters when she was asleep). She got lots of breathing treatments. She got Lasix. We had labs at both hospitals. She had tracheal aspirates run. We did an ECHO. Endocrine doubled her thyroid med. We did IV antibiotics. We are doing inhaled antibiotics now at home. And we are waiting to hear back from cardiology. I convinced them to send us home before we got all the tests back. We can handle most of this over the phone. Her BP is low. 50s over high 20s or 30s and she’s fine. Something is weird with that. Some of the time it’s higher, but never “normal.” Critical care attending had to be paged – no one likes the BP. But she is warm and well perfused. Her cap refill is good. She is alert. We’ll see what cardiology wants to do.

When I was talking to the pulmonary attending, I asked how could I have done this differently. This is what she said.

You have to get over anniversaries.: Two years ago Bella aspirated. She went from this to this: From cute in her Easter outfit to sedated and paralyzed fighting for her life. Not something you get over quickly.

Don’t wait till you are worried sick and it’s 2 AM. Come in during the week and during working hours. There will always be at least a pulmonary fellow if not a faculty staff that can come down and take a look at her x-ray. Insist before the Emergency Center attending just admits you (because we are an automatic admit).
You did the right thing. You did what we tell you to do. She wasn’t doing well. You brought her in.

So what do I know now that I didn’t know last Friday. Not much. But I do know that she probably didn’t aspirate. Her lungs scare the bajeebers out of people. When you smell fear in doctors, it’s not a good thing. She’s still not OK. But she will live. We made it through another Easter.

I am grateful that when we are admitted we go to the PCU. They are so kind to us there. They all know her and love her. We get some much love there.

Well, Bella Boo, keep fighting. We’ll get through this spring somehow.

Special To Me

2011-04-25T15:44:00.002-05:00

I love Rachel Coleman's song "Special to Me." It makes me teary every time I hear it. We have had quite the weekend - I'll blog later when we get home, but I wanted to share this video. I couldn't find a you tube of Rachel singing this song, but I found this one - and I love it! I love the love!

How I love you Bella!!

Glad that week is over

2011-04-18T12:45:00.001-05:00

Sweet, crazy girl. Allergies? Growing? Aspirating? Who knows. At least we made it through the week at home. It was one of those weeks that I think I should call the doctor, but then I think what are they going to do that we aren’t already doing? With all the meds she has, plus all the PRNs we threw at her, I think we have all of our bases covered.

Anyway, we survived and we are grateful that week is over. I am hoping for a great week this week.

I have been wondering about vacation. We had thought that to protect Bella and keep her in one environment that we could keep clean, we might rent an RV and go somewhere. But then I went on an overnight camp out with our young women from church and realized that plan won’t work. Where do RVs park? Campgrounds. What is wrong with campgrounds? Smoke. Lots of smoke. So there goes that plan.

And then there is the stimulation issue. Bella gets over stimmed so easily. If she’s tired, if we laugh too much, a lot of things set her off.

Have to keep thinking………….somewhere away from a lot of people and noise and nothing to upset the lungs - Cause we want to have fun!!

Breathing and Eating

2011-04-13T12:50:00.001-05:00

(aka Mama’s Panic Attack)

I am trying to just keep breathing over here. We have made a huge step. Bella’s GI doctor felt that she did well enough with a couple of hours of G-tube feedings to try and push her a little. So the amount she would have gotten in four hours, she is getting in three, effective yesterday. And on top of that her color is all off today.

Nurse called out today. Let me just say that I am grateful we live in Texas. I am grateful that Bella has Medicaid, hence she has almost 24/7 nursing. There is a lot going on with the Federal Budget and Medicaid is in the spotlight. So far, Bella hasn’t been touched. And for that I am grateful. My friend Lacey has no nursing with her son Jax , and it kills me. When I am tired and think about feeling sorry for myself, I think of her and realize how blessed we are.

back to Bella…so with no nurse, it’s me doing everything today. And I’m watching this little monkey play and get all of her cords messed up like a big plate of spaghetti – and I am happy, and I am scared. She’s going to be fine, I tell myself. And then I go and review the signs of aspiration, as if I didn’t have them all memorized, just in case I might have missed something. Because we have been down this path before and it almost killed her. I have been playing out in my mind the worst case scenario – which ambulance company to call or just to call 911, who should pick up the kids after school? What about sister’s activity at church tonight? Who will watch them tomorrow? And the day after that? And the day after that? When to call Jason. Everything. Too bad my imagination is so good. My heart starts pounding. The adrenaline starts flowing. I start thinking about conversations with doctors. So now I am trying to stop myself. She is not the same girl she was. She is stronger. She is amazing. She loves life. She wants to live. She shows me that everyday. She is going to be fine.

Thank you for leading the way Bella. You are amazing!

Sweet Bella

2011-04-10T09:12:00.001-05:00

I just love this sequence. Look at me, play with me, love me! Bella’s theme

She who won’t bear weight, will stand in the stander. Sorry love. Physical med and rehab doctor was ordered. Soonest opening – July. Oh well.

These two – they want to play so much! How they make my heart sing.

She looks so big here!

Medically, although you can’t see it in these pictures, she has been super junky and the vent has been our friend a lot. I guess I only take happy pictures. LOL. Hoping that Spring is almost finished. So grateful we have all the supplies she needs to stay happy.

She’s so happy!

2011-04-04T08:51:00.001-05:00

That is what a new nurse said about Bella. And she is right. Bella is just happy to be here on Earth.

The PT wanted to try out the creepster – she wasn’t pleased. What are you doing? Why are you trapping me in this thing? We’ll have to come up with another way to teach her to crawl. Her spio pants and lift came. So far they haven’t made any difference on that right leg – she just won’t bear any weight on it.

Now swinging – that is something she loves, loves, loves!

Hanging out with the family – love ya babe.

Thankfully we got to start our antibiotics again on Thursday and everything is starting to clear up in those lungs again. Two weeks on is great – two weeks off is a little too long. Looking forward to all of this pollen settling down so she can won’t have to work so hard and will be able to get off the vent more.

Bella’s Week

2011-03-27T10:02:00.001-05:00

Monday we spent at TCH. We got our last synagis shot. I am so grateful for those. I worry a little less. We saw GI and we changed her GJ out for a new one. She hated the change. No one touches her button, no one. It wasn’t a good experience, but it’s done for another three to four months. GI was a good visit. We really want to see if we can start working toward getting away from continuous feeds. So she changed her day time feeds to G rather than J – be still my heart. If she can tolerate it, we see if we can’t stretch that little tummy out and start working towards bolus. Again be still my heart. Since aspirate pneumonia about killed her in 2008. But she is not the same child she was then. She is strong and she wants so badly to be free from all of her tubes. We’ll see. It would be wonderful!

Whenever she is feeling up to it, this is where she wants to be – outside swinging!

I got Bella two new Signing Time DVDs – she adores Miss Rachel. Checking them out, “look Mom!”

Sweet girl just doesn’t do well with the pollen. I had been waiting for it to happen and hoping I was just crazy, but she has been re-introduced to her friend the concentrator. Sigh. I’m so grateful for the vent and oxygen. Where would my sweet girl be without them?

On a good note, she does do better after she’s had a chance to wake up and clear (well some what) her lungs of all of that garbage. She loves to play in her hair bows lately! See how she has herself so tangled up in all of those cords? Her circuit is literally all the way around her. Sweet, crazy girl!

Field Week

2011-03-20T20:03:00.001-05:00

That is what Lizzy said about Bella’s week. She didn’t just have a field trip; she had a field week! On Wednesday we went to the dentist – she has some teeth that haven’t erupted which is normal for DS and she has the normal mouth of a kid that is G tube feed – lots of plaque, but no cavities. He said he will have to sedate her and blast it all off, but he wants to wait a while to do that. Fine in my book.

My Bella Boo loves to swing. Loves, loves, loves it! She will pitch a fit if she isn’t done and you try to take her inside. Sorry your highness. I am including a couple of videos below. She is signing swing now – it’s not the normal “swing” sign, but it’s what her hands can do. I love it! I love that she is communicating! A few months ago her therapist and I were talking about using pictures for her to communicate. We don’t need to. She is starting to sign and even make some vocalizations, although I am still anxiously awaiting the coveted “mama!”

The butt scoot is the technical term our PT uses to describe how she gets around. We don’t use that term at our house, so the girls call it the bottom scoot. She is so funny. There isn’t much she can’t get into these days! Yeah for you Bell.

Lizzy told me that she loves Bella so much – she wants to adopt a baby like her when she grows up! Sounds like a great plan to me Lizzy! If you can see it, Bella curls her little feet around the girls' bodies to hold on tight when they carry her.

Bella has had the best week, so we were brave and took her to Brenham. It was so much fun! We played at a wonderful park and then went and had Blue Bell Ice Cream.

Even after that big expedition, she had a great night. So we took her to church! That was her third time. If she keeps this up, I might actually start believing the doctors about decanulating next summer.

You are amazing Bell! We love you!

So very, very grateful….

2011-03-09T15:30:00.001-06:00

We have had several call outs of late, so I have had a lot of hands on time with my baby girl. A lot of time to be with her and love on her more than normal. More bathing, more diaper changing, more time. That’s how I found the first swollen lymph node. That night, another. The next day another. The next day another. And that’s when I discovered that the internet is not always your friend because it’ll tell you the worst case scenario. And then my mind filled in all the blanks. I was panicking. I was terrified. I was trying to figure out how we would make it through another prolonged hospital experience. Monday morning came with another call out. But I am grateful – because it meant that Jason took off of work to go downtown with me. Because this was either going to be a reassuring visit or a life altering one. I was glad he was there. Our doctor ordered the CBC. That night I waited and hoped. The next day my Father-in-law posted on Facebook that it was his one year anniversary since being diagnosed with Leukemia and I sat there reading that with terror griping my heart. Today I learned that my baby does not have cancer. Her results are a little off – but they don’t look like cancer. Today my heart is breathing again. You don’t live long in the DS world without running into leukemia. I was afraid it had run into us. Today it’s not us and I am grateful. But my heart is still beating a little tenderly and I’m thinking of the families that today got different news. Today it could have been us. One day it still could be us. Today it’s not.

I wish I could totally shake this fear. Leukemia scares me. It’s not fair that these sweet kids have such a higher chance. The good that has come from all of this is I got to talk to our PCP about cancer and Bella. I have been so afraid that if she did have it, that oncology would take a look at the vent and everything else and just hand us off to hospice. I have been afraid they wouldn’t fight. My doctor reassured me that they would and she would be right by my side fighting for Bell.

So there we are. Today we are cancer free. I hope we always are. It’s been a rough five days. My prayers and tears go out to all the families that are fighting for the lives of their babies. May God bless you.

Bella’s Week

2011-03-06T12:31:00.001-06:00

Ever feel guilty cause your little one is doing well?

I heard of a little one that died and my heart crumbled.

I have been praying for and thinking of little Joel. He is my friend’s son. He has struggled of late. I was so afraid for him and his family. He is back in the hospital. Be strong little one.

Meanwhile, Bell is doing well. It is Spring here. She wants to be outside. Which is wonderful. It means she is feeling well. It also means occasional oxygen. It means tons of breathing treatments. It means secretions headed to green. It means taking out her trach and cleaning it every day because we have plugs. It means lots of CPT. It means a trach that smells like old gym shoes. It means more antibiotics. But this Spring I am taking her outside. She loves it!

Feeding – she’s not so interested. Tasting, yes. Actually working, actually swallowing, not interested. In her defense it’s harder when the secretions are increased to work with saliva and food and get it down into the tummy. Oh well. It’ll come. She’d rather play in it anyway.

Playing with her mirror – her absolute favorite toy!

Two appointments this week. First for labs. The lady looked at her and wouldn’t even try. So we went somewhere else. But good came of all of that. The other lady usually does her, so she knows how hard a stick she is. She wasn’t up for it that day. We went to the second place and they feel in love with her. They got her in two tries. We’ll be going back!

Second appointment – eyes. Last year they were really bad, this year, the doctor says they are just a little worse than normal and he’s not worried yet about the eye that sometimes crosses. And we don't have to come back for a year! Wahoo! OT meet us there and we did our therapy while we waited. Bonus!

A trach mask – we actually got to use one! She was off the vent when she needed her neb treatment so I used the trach mask. I feel like we have hit another milestone!

My adorable, wet, all nice and clean, baby Bella. She’s so cuddly right out of the sink!

Her Latest

2011-02-28T21:28:00.001-06:00

Sorry this one is side ways – oops!

Bella the Beautiful

2011-02-20T10:57:00.001-06:00

Bella wants to be mobile. She is determined to figure out how to move. It’s so fun to watch her become. She has been on the vent more than off lately. I have been wondering of late what we will be working with once she is off the vent for good. What will she be like? A really bad asthma little girl? Will it slow down her development because she’ll have to spend so much effort and energy breathing? I’m just worried. I like where we are. The future, being unknown, is still frightening to me.

Meanwhile, her PT said to get a walker (the play kind, not the gait trainer). It gives her another position upright and where she can learn to move her feet and put weight on those little legs. Enjoy!

Bella’s Week

2011-02-13T20:55:00.000-06:00

Sweet Bella – ultrasound of her liver showed that it was enlarged. That wasn’t very surprising. It also showed that she has stones in her gallbladder. Ran that by her PCP who told me that it was up to GI, but they probably won’t do anything about it unless it causes a problem.

Had to stop in and see her PCP – we were not doing well and headed to sick. So two meds later, we are seeing an improvement. It has been really cold – and that wheezing. Ick. We got our hands on an inline passy-muir valve. Her other passy-muir valve she has to be off the vent to use. That just isn’t happening right now. But this one you can use while using the vent. Now that her antibiotics are kicking in her secretions are more manageable and she is able to use it! She loves to make noise! I about need a valium every time we use it, though. But I am getting used to it and she is getting used to it.

In other news, this kid is so excited to move! She is learning to dance – her version, a little wiggling of the shoulders and sometimes the trunk. So fun to watch! And that mat is coming through again. She is scooting – she is using momentum to scoot that little bottom across her mat to reach toys! So thrilling to witness!

My beautiful, happy girl

2011-02-06T11:27:00.001-06:00

Here’s to exploring and learning and developing every day!

Thankfully not much to write this week. It’s been really cold, so we have had some lungs complaining. But we have been home. We have been warm. And we are grateful!

Playing with sissy – always makes my heart happy!

This mat is magic! She will put her hands down on it. Implications……we are starting to learn the beginning skills that will one day be crawling! Yea for the magic mat!

I’m here! I’m here!

2011-01-30T22:02:00.001-06:00

Sometimes I feel like:

Some people see Bella and see a syndrome
Some people see a medical record number

Sometimes I feel like Horton (from Horton Hears A Who). Am I the only one that hears her yelling, “I’m here! I’m here!”?

I comfort myself in knowing that she is a beautiful, alive, and vibrant soul. Everyone who takes the time to know her, loves her. Who wouldn’t? She is my Bella and I love you babe.

Monday she had one of those icky viruses going around. We didn’t even bother to dress her up, just new jammies. She cried and cried. I gave her this puzzle and snapped the picture and it was back to crying. But by Friday she was her happy self again.

We moved her bed so she can look outside and get some vitamin D. Of course in these pics, she is admiring herself in the mirror. Can’t you just hear her say, “Yes?!?!” in the first one?

Playing in therapy. I was blown away that she even tried to do these pegs in a bottle. And we took her outside – beautiful outside. The girl loves to swing!

Reading with Sissy

We went to a post op with ENT this week. And I spoke with the director of outpatient services. Sorry, but if my child’s wheelchair doesn’t fit through your waiting room, then NO, you are not handicap accessible. He assured me that would be looked at and fixed. Sigh. At a children’s hospital? New campus. Not a good excuse. Anyway, ears look good. Wants an ABR. Oh, and she lost weight again. Another sigh. But meanwhile she is beautiful and we love her.

Good things are happening around here

2011-01-24T10:33:00.001-06:00

Bella is doing really well. She is back on her antibiotics which is helping her secretions, which means she feels better. We went to see the orthopedic doctor this week – not such a good experience. New facility, people still learning what they are doing, but very obvious to me that they are not used to kiddos like Bella. OK, I’m alright with that. But I’m not alright with doctors that aren’t OK with kids like Bella. Anyway, we’ll be finding a new ortho, PT suggested we just go to a PMandR doctor. We may try that. Long and short of it, her left leg is shorter than the right one. We ordered lifts for her shoes. And he has no idea why she won’t bear weight on that right leg. The fact that her knee is swollen chronically, that her patella is floating around her leg, and that her lower leg is torqued in a funny angle, not a concern to him. She’s not developmentally ready to stand anyway, he says. Hmm…and how did he determine that one? By glancing at her on the vent in her wheelchair. Ahhh… well, this Mama believes in her baby and only wants doctors on her team that also believe in Bella. We’ll figure this out Bell.

Meanwhile, she is adorable as ever. Trying to learn to chew, using her stander, and having crazy hair after leaving it in braids over night.

Her OT brought over this mat she found at Lowe’s. It’s great. She can sit up all by herself (!!!!) and we aren’t as worried about when she does tip over. She is loving being on the floor and playing!

Happy Girl

2011-01-17T08:36:00.001-06:00

Who needs toys when you’ve got alcohol prep pads to play with? She is such a happy girl!

Green Beans…..yum, I think.

Headed downtown for her GI appointment where we finally got the official OK for daily food. She also increased her feed rate again – they would really, really like her to find a curve, any curve on the growth chart. She has also been breathing more on her own – thus using more calories. Breathing is hard work after all.

Oh, Bella is doing the funniest thing. She signs in her sleep. I love it!

For fun:

Videos

2011-01-09T13:16:00.001-06:00

Bella gets shy when we are talking about her. You’ll see that. She is tolerating her passy-muir for a few minutes then she starts changing colors, so we enjoy it while we can.

She loves to rock! No worries – I am right in front of her, Daddy is on one side and the nurse is on the other. She was feeling really well that night - she is all over the place.

Eating, Jumping, and Being Two

2011-01-09T10:46:00.001-06:00

Food is messy and sticky and she loves to explore it. She will take somewhere from a teaspoon to a tablespoon of food in a day. We are so thrilled. Then she signs “done” and we clean up. This is so exciting for us!!

The Johnny Jump Up – amazing things you can do when your baby isn’t tethered to a vent! She will use her left leg to go around and she likes the swinging. Developmental Services was showing her how to tear paper – she got that one quickly. LOL.

And the sign for music.

Since her tubes, she has started to sign. Her therapist and I have started calling her Bella 2.0. Who is this amazing, beautiful child? She is blowing me away! She has learned almost ten signs in the last 3 weeks. Good for you Bella!

She is two. She explores – this is her trach. Yes, she pulled it out. She pulls on everything! We are getting quite creative on how to keep those exploring fingers away from important things. Sweet girl. I am secretly happy – she is full of energy and zest – she is feeling well. Yeah! (No worries this was during trach care and it was very quickly put back in, but notice the lack of distress! )

We saw pulmonology this week. He loves that she is doing so well right now. Is it the bronch that cleaned out her lungs? Is it the cyclical antibiotics? Whatever it is, everyone is happy. He has grand plans for our sweet girl that involve our tracheal malaysia and chronic lung disease and pulmonary hypertension all behaving and giving this girl a more normal life. As I say, we’ll see. Bella writes her own book. We just get to come along and enjoy the journey.