An Update of Sorts

I know I haven't updated regarding NIH yet.  It was an emotional week, with lots of things I'm still processing.  I want to recap the week, if for no other reason, so that I can look back at it someday.

For now though, I just wanted to check in since it's been a while since I've blogged. 

Bella is doing ok.  She gets private therapy 3 days a week, (45min away one way), plus add in dr appointments and the chaos of 2 brothers..and well, life is busy!

We saw her epileptologist at the end of Feb, and she had an outpatient EEG the same day.  Bella's EEG is pretty terrible, and she's been admitted urgently several times after a routine EEG.  (It's not fun to be admitted 2 hours away when you are totally unprepared)!  Her EEG typically draws a crowd, and panics the EEG techs, as it shows constant seizure activity (nonconvulsive status epilepticus is the technical term).  We don't see many of the seizures she is having, and I've learned to trust my gut, and go more on how she's acting (less interaction usually means she's having more subclinical seizures).  I decided to pack a bag this time (hoping that by being prepared, we wouldn't be admitted)!  I'm happy to say it worked and we were not admitted! 

Not much has changed in her EEG.  It still shows constant seizure activity, with seizures occurring about every 30 seconds.  If I think about that fact to much, it makes me want to cry.  That has to feel terrible.  We are slowly increasing some of the meds she is on, in the hopes that it might help the seizures we do see.

Funny story:  We live in an area that is home to a large Amish community.  (No, we are not Amish)!  This was the my conversation with the EEG tech:  (There was a road closure due to a water main break, so we were a few minutes late).

Tech:  "Did you drive yourself here or did a van bring you?  Did you have to wait on your driver?"

Me:  "Um, no, I drove myself". (looking confused). 

Tech:  "Oh , WOW!!!   You drive?!!! I thought Amish didn't drive!!" 

Me:  "Um, I'm not Amish."

Good grief.  Does our picture on the blog look like we are Amish?  Sigh.

Bella's also been having some GI issues.  I won't go into all the details right now, but the current consensus is that her viral illness in November, triggered some of the symptoms we are seeing.  She is currently on an antibiotic to see if that will help.  If not, we may be looking at changing her G-tube to a GJ tube (instead of the tube being in the stomach, her feedings would bypass the stomach, and go straight into her small intestine).  I'm hoping we can avoid the GJ, but obviously will do what is best for her. 

There's never a dull moment with Miss Bella!  :)

Here are a few recent pics.  On the days when I wonder "why" or feel down, this smile gets me through.  I love this little girl with all my heart, and I am so beyond blessed to be her mama.

 This pic was taken at 2am.  I do love her smile, but at 2 am, I'd rather be sleeping.

Go to sleep, Missy B!!! 

 

At PT with her wonderful therapist, Melissa.  She's supporting most of her own weight, which is HUGE!! 

 



Love.

 

What to Say?

To those of you who are visiting from Kelly's Korner, welcome!  I'm Julie, mom to 2 boys, and a little girl named Bella.  Bella is our medically complex, special needs child.  Bella is 4, and although she has an impressive list of diagnoses, still does not have a central diagnosis, (despite countless tests, and procedures).  She is non-mobile, nonverbal, suffers from epilepsy, low muscle tone, and the majority of her nutrition is through a G-tube.  She also suffers from an irresistible smile, contagious giggles, and crazy curls.  ;)  Bella recently was accepted into the National Institute of Health's undiagnosed disease program, and will be admitted for a week at the NIH clinical center in November.  Prayers for that week (and for this anxious mama's heart are so appreciated).  :)

I've been absent on this blog for a while, because to be honest, I'm not sure what to write.  Do I bore people by giving updates?  How much information do I share?  Do I write about yet another doctor visit, therapy appointment?  Do I write to much about Bella and not enough about the boys?

I miss writing.  I miss chatting with friends.  Sometimes, I feel as though people aren't really sure what to say to us, for fear of saying the wrong thing. 

You know what? 

I'm not sure most days what you should say either.

Some days, I want to talk about Bella and the challenges we are facing.  Other days, I really just want to get away from it all, and would love nothing more than meaningless conversation about TV shows and the latest fashions.  One hour I'm tired and grumpy from fighting yet another battle with the home care company (how hard is it to send the right box of feeding bags?),  yet in the next hour I'm giddy from a great physical therapy session. 

Confused?  Me too.  How can you know what to say, when I don't even know what I want to hear?  I have found there are some things though that should just be left unsaid (and yes, all of these have been said to me at one time or another).

1.  I don't know how you do it, because I could never do it.  You could.  I promise.  I never in a million years thought I would be the mom to a non-mobile, non-verbal child with significant medical issues.  But I am.  You do what you have to do for the people you love more than anything else in the world. 

2.  God only chooses special parents, and remember he never gives you more than you can handle.  Um, OK.  I promise you, I'm not that special.  I'm just a mom, who loves her little girl more than anything.  What you are not seeing is the sleepless nights, the tears I've cried in the shower, or the displaced anger that I've taken out on my husband and other kids by my snapping and nagging. I do think, that sometimes, God DOES give me more than I can handle. I'm so grateful though, that even when it feels like it's to much, he's never once left my side or left me all alone. 

3.  But she looks so normal!  I can't even begin to write about how much this comment irks me...

4.  She has such an easy life, being pushed around in that stroller all day!  Right.  She does.  I'm sure she would much rather be pushed around in a stroller all day rather than playing, running, and jumping like other little girls her age.

I'd much rather hear words like "I'm praying for you", "How can I help", or even just a simple, "Hi'.

That being said, the truth is, I really appreciate you taking the time to try to connect.  Thank you for including me in a conversation, and not turning your back because you don't know what to say.  Thank you for taking the time to ask me how things are going.  Thank you for not staring at my daughter, without saying a word.  Thank you for understanding that some days are hard, and that we aren't really that different, me and you. If you run into me at our kids school, or at Target, don't be afraid to say hi, or ask how things are going.  I promise I won't hold it against you if you say the wrong thing (even if you say a phrase I've listed here), if you promise to extend grace to me when I'm having a bad day.

 



Even better?  Don't forget about Bella.  The people who take the time to say hi to Bella, who give her a smile, and treat her like any other 4 year old, will always get HUGE brownie points from this mama.

NIH (an update)

I'm waaay behind on blogging, but wanted to take a moment to thank everyone for their prayers and support regarding my last post.  If you remember (from way back in January), it was about Bella's application to the NIH's undiagnosed disease program.  We were told by Bella's neurogeneticist (no child should have to have a neurogeneticist for a dr..but I digress), that she would most likely not be considered, given the findings on her MRI.  Furthermore, we were told, even if they were to consider her, the chances were very, very slim, as only a limited number of applicants (50-100) get accepted (out of 1000+ applications).

Well.

I received a letter today in the mail from the NIH.  I opened it, expecting a "thank you for your application..blah, blah, blah".  Instead, there was this: "After a stringent review process, your patient's case has been accepted for evaluation at the NIH Clinical Center." 


ACCEPTED.

Honestly, I'm shocked.  I'm overwhelmed.  I'm terrified.  I'm excited.  I'm hopeful.  I'm sad.

I'm terrified of what they might find..or worse yet, that they won't find anything (this is really the end of the road for us in terms of getting a diagnosis).  I'm sad that my beautiful little girl with the crazy curls is "interesting" enough to be considered (can't I just worry about scraped knees and ear infections?), and I'm overwhelmed with gratitude that she's been accepted.

For all you who have prayed and thought of us, sent me messages and texts...thank you, thank you, thank you.  You have no idea how much that means to our family.
 
I should have more information in a few weeks, but the evaluation should take place in late fall/early winter at the NIH campus in Maryland.  Bella will likely be admitted for 2-5 days, with some of the best minds in medicine evaluating her.

Our God is amazing, isn't he?

*and I am so, so sorry for all of you that complained about the word verification for comments.  I was getting some spam comments, so it's back.  :)  Sorry!*

Prayers...

Well, hello there.

I promise I didn't plan on leaving for months and months.

I struggle with finding balance between being too honest and real, how much of Bella's medical information to share, how much of what I'm feeling I should put "out there", but yet, this is our life.  I can't pretend it's all sunshine and rainbows, because sometimes, it just isn't. 

I've thought about going private..but then I think of all the people who reached out to me when we first started this journey three years ago.  I wouldn't have found many people I now consider dear friends, had they not shared their story and been open with their feelings.

Anyway. 

For all our prayer warrior friends..I have a huge prayer request.  Bella's neurogeneticist recently submitted her application to the National Institute of Health's Undiagnosed Disease Program.  What this means for Bella is that if she's accepted, she would spend 4-5 days in Washington, DC, with some of the top experts in the country-all trying to find a diagnosis for our curly-haired girl. (Along the same lines of "mystery diagnosis", but not solved in an hour)! Probably the very best use of our tax dollars ever! The odds are not great.  Out of all the applications they receive, only 50 people every year are invited to participate in this program.

We were told by our neurogeneticist that they will most likely not consider Bella as a candidate, based on her MRI.  According to him, we are likely dealing with something that's too rare for even the undiagnosed disease program to consider.  (I've always known she's one in a million...)  :)  The NIH called recently asking for additional pictures and videos, and some more medical information.  I'm not sure if that's a positive sign, or if it's just a routine procedure, but I'm trying not get my hopes up.  I truly am at peace with whatever the decision might be (God has demonstrated to me again and again that HE is in control and has a wonderful plan for our precious Bella), but prayers are appreciated!  All the information has been submitted, and now the waiting begins.  It really is the "end of the road" as far as testing at this time, until in the words of our neuro "we get smarter and science catches up". 

Likely a diagnosis will not change things at this point, and most likely there will be no treatment to cure whatever "it" is.   But, a diagnosis will be helpful for our boys when they decide to have children, will possibly help us know what to expect for Bella's future, but most of all, what if?  What if someday, there is a treatment for whatever condition Bella has?  We'll never know that answer without a diagnosis. The "what if's" keep me awake at night, and I'll never stop fighting for a diagnosis and believing in her.

Thanks so much for all the prayers and love.

This has been my motto since I first heard this song a few months ago:

(and I was going to post a few pictures, but blogger and I are having a little spat, and Bella desperately needs to go to bed.  If I have time to play around with it later, I'll post some pics).  :)

Gratitude Journal Day 1-4

On facebook, I keep seeing posts from friends who are posting what they are thankful for each day in November.

I decided to jump on the thankful train..even though I'm a few days late.

November 1-

I'm thankful for a God who doesn't care how often I mess up, how often I get angry or question him, who loves me unconditionally, and has promised to never leave or forsake me.

Despite all my fear and anxiety regarding what's going on with Bella (hello, heart palpitations), I'm so glad that He is always by my side..and loves Bella even more than I do, and even more than I can imagine.

I love this new song by Chris Tomlin..love, love, love.

November 2-

So thankful for a NEGATIVE c diff test.  (Can I get an AMEN)?!!  For those of you who don't know, c diff is a bacteria that normally lives in our gut, but is kept suppressed by the "good" bacteria. Sometimes if a person is on antibiotics for an extended period of time, (or multiple antibiotics), it will overtake the good bacteria..causing abdominal pain, horrible smelling diarrhea (trust me, I have post traumatic SMELL disorder, I think), and really just makes Bella cranky and miserable.  She first got it after she was on antibiotics for a g tube site infection, and I still think (although I don't have proof), that having the g tube surgery put her at an increased risk.  We finally had a negative test after months of trying to fight it last May.  Unfortunately, when she had an ear infection a few months ago, it only took one dose for the c diff to come back. 

Last week, we finally had a negative result!  Yay!  (Although as I write this on a Sunday night..I'm a little suspicious it's coming back..).  For now, though I'm ignoring my suspicions!  Each occurrence is a little harder on Bella, seems to be more painful, and is harder/takes longer to fight.  Ok, enough poop talk!

November 3-

I'm thankful that Drew and I could have a "mom/Drew date night".  Drew definitely needed some special one-on-one time, and it was so fun to hang out with my favorite ten year old.  Our "date" consisted of Panera bread, a Target run, Books-a-million, Dicks Sporting Goods, and lots of lego talk.  We ended the night at Menchies for ice cream! 

November 4-

I'm thankful for this little bumblebee.  I call her "Miss B" all the time, so this Halloween outfit was perfect!  We even had half a smile for a picture (smiles are somewhat rare these days), so I consider it a success!  Bels..I love you so much and you are my favorite bumblebee ever. 

 

 

 

..and I know this is a gratitude journal, but whoever thought up the idea of daylight savings time, clearly was not a parent to young children.  Just sayin'.

 

Happy Monday!!

 

Nonverbal

One of the hardest things about this journey (who am I kidding, it's all hard), is the fact that Bella is nonverbal. I constantly feel as though I'm a detective, trying to figure out what she's telling me, and what she needs.  It's especially tough when she doesn't feel good.

Lately, there's been some rough weeks of sad eyes, a fussy Bella, lo-grade fevers..but that's all I know.  Something isn't quite right, but I'm at a loss.  Is it her ears? Her stomach? Does her head hurt? Does she just not feel good? Is she dizzy? Does she have blurry vision? It can't feel good to have a brain that's constantly seizing..is that what's wrong? I don't know..and she can't tell me. Her ears don't look horrible (a little red, but not enough to treat), her stomach may be hurting (she has a c diff infection..again-ugh), and seizure meds can cause dizziness and blurred vision as a side effect.

 I'm usually pretty good at reading her cues-Bella's eyes speak volumes. Not a day goes by though, that I don't wish she could tell me "this hurts", "I don't feel good", or "I'm just tired today". It's an exhausting job, honestly, trying to figure out what she's feeling, and what could be going on, before it causes even bigger problems.

Here are two pictures from the last few days:

Typically, on days when Bella is feeling good, her eyes sparkle.  Like this:

Having a nonverbal child is one of the reasons, I hate the feeding tube, (even though I'm grateful for it at the same time).  Typically, a 3 year old can tell you when they don't feel like eating, or they can refuse to eat.  Bella has no choice.  Overnight, we hook her up to 600ml of pediasure and water, and she can't refuse to eat it or swallow. 

For now, I'll continue to play detective, try to read her cues the best I can, and keep wishing for the millionth time that she could tell me what's wrong.

In the meantime, I hope that lots of love, a bunch of snuggles, and even more kisses, at least help her feel a little better.

Happy, Happy Birthday!

Last week we celebrated Bella's 3rd birthday!! We did get released a few days after my last post, and while Bella is still not back to her normal, she's much better than she was in late March. I'll save the medical updates for later.

In one way, it's hard to believe my little girl is 3...in another way it's seems like a long 3 years, years which have aged me at warp speed.

Birthdays are hard for many reasons, but I'm not going to dwell on that in this post.  We have a birthday to celebrate!

Bella was a little "off", and still not feeling the best on her birthday, but we managed to get a few good pictures.  I didn't get a cake since Bella can't eat it (and once again I didn't want to dwell on what she couldn't do on her special day), but I made her Oreo pudding (which she loves), and we put candles in it.  Hey, it works-and the boys loved it too!

What?  It's my birthday?!

We spent a large part of the day swinging, which is one of Bella's favorite things

I know it's blurry, but I puffy heart LOVE this girl's smile.

 If you remember, a great organization called Inspiration Through Art was the reason we were able to get some fabulous family pictures last October (one of the pics is in the header on the blog).  They also have a "treasure box of love" program which matches a child with volunteers who create a treasure box for his/her birthday.  Bella actually received two boxes, and the gifts she received made her birthday so special.

Typical Bella lately, happy one minute, crying the next.

Checking out box #1

The first box had lots of fun girly stuff!  Rings, bracelets, a purse, the crown clip in Bella's hair, bubbles, and books!  Cute! 

Box #2

The boxes were decorated so beautifully, with Bella's name on the top or side.  I'll definitely be using them in her room!

Beth, if you are reading this, thank you so much for what you did on your box.  Bella loved what was in it, and it made my night to see how happy she was.

One of Bella's favorites from the second box was this plush animal that vibrated and played music.  Alex would put it behind her shoulders, and she would smile and giggle.

Bella giggles are simply The.Best.

Happy birthday 3 yr old Bella!

The end of the evening:
Red, tired eyes, a crown clip, a new toy to chew on, and her favorite pink blanket. 
Even princesses get tired sometimes.

I cannot tell you how much these boxes meant to our family!  She LOVED them, and I'm so grateful for the volunteers who sacrificed their time and resources to make our little girls birthday so special.

What a ride these last 3 years have been.  I'm grateful we don't always know what the future will hold. I'm not sure I would have survived had I known about all the worry, uncertainty, and tears that would be involved in the last 3 years. 

 I don't know what the next year will be like, but I do know one thing:

  I love this little girl more than anything.  I love her sparkle, her smile, her giggles.  I just love...her.

Happy, happy birthday Isabella Rhes!  I'm so very proud to be your mama. 

Admitted...

Bella's been admitted since Tuesday for extended video EEG monitoring. It's been a rough month of watching Bella slowly lose her smile & sparkle, lose skills in therapy, and become more lethargic. I'm tired, grumpy, & want my sweet girl home.

I'm not sure how to post pics from the iPad, so I only have a couple, and they probably wont display in the right place. Bella's been a trooper, but she is D-O-N-E.

Truth be told, I'm done too. Done being on camera all. The. Time. Done hearing that Bella's EEG looks "terrible & highly active". Done worrying that eventually epilepsy will rob Bella of her sparkle & smile. Done having to hold Bella down to place EEG leads & countless IV's & blood draws.

Neurology adjusted some medication & added some more. I'm hoping this will keep us out of the hospital for a while. The plan is to be discharged tomorrow (although of course, she's more lethargic again today). There's truly no place like home....especially after being in a cramped, depressing hospital room for a week. In typical Bella fashion, it seems as if there are no simple, easy answers.

But, Tonight, I'm thankful for mommy/daughter snuggles, neurology who took my concerns seriously, & sweet Bella smiles that melt my heart.


I love that little girl (and her brothers!), so much, & I can't wait to be home.

Feeding Tube Awareness

It's feeding tube awareness week! 

Each day on facebook, there have been questions to answer to spread awareness on feeding tubes and to help others understand what's it like to have a family member rely on tube feeds.  I didn't answer the questions on facebook, but thought I would take a little time here to answer some of them.

1.  What would be different for me/my child if tube feeding was better understood?

This is a big one.  I can't tell you how many times I've felt judged when I don't order Bella food or drink when we go to a restaurant.  Sure, some of it's my imagination, but it's hard to know that some people think you are depriving your daughter. The dirty look and sigh I got when we went trick-or-treating (for not letting Bella have a candy bar),...definitely not my imagination.  I don't usually let it bother me, but there are times I just wish all this was easier. Trust me, if Bella COULD have a candy bar, I'd let her have as many as she wants.  Same goes for the candy offered at the bank, grocery store, etc.  Heck, I order the whole kids menu for her if I could.  I'm not a mean mom...I promise.  :)

I hope people understand that just because Bella may get the majority of her nutrition from a tube, it doesn't mean she's really any different from the Bella she was pre-tube.  She's still the same giggly, smiling, happy 2 year old.

Well, sometimes.

2.  Why does Bella have a feeding tube?

When Bella turned one, the pediatrician brought up the topic of a tube, because Bella was falling off her growth curve, and had stopped gaining weight.  We had a swallow study around the same time, that showed when Bella swallowed, some liquid was going into her lungs.  After we started thickening her bottles, she showed more interest in eating, and started slowly gaining weight.  About 6 months later, we started having the same symptoms:  not gaining, not interested in eating.  A repeat swallow study showed she was now getting liquids in her lungs, even with it being thickened. 

Consistently getting liquid in your lungs is associated with lots of health risks:  pneumonia, infections, aversion to eating.  At that point, we decided to go ahead with the gtube (and it was not an easy decision).



3.  What's your daily routine like?

Our experience is a little different than some families, because Bella is still safe to eat blended foods that are a pudding consistency.  We still feed her 3 meals/day, usually whatever we are having for lunch or dinner, I just blend and spoon feed to Bella.  She does tire from eating, and doesn't eat enough orally to sustain her.  We don't give her liquids by mouth,since she can't swallow them safely, instead we give them through the tube.  We give her water through the tube during the day (which involves being hooked up to the feeding tube for 40 minutes in the afternoon), and while she sleeps she is fed continuously (with a pediasure type formula).  The nice thing about the tube is that Bella can get most of her meds through the feeding tube.  No fighting with her to take her antibiotics or other meds!

Some days...our routine includes waking up to find her mattress, sheets, pajamas,etc. soaked with pediasure.  Blech.  Not only is it awful to clean up, it's 26oz of formula and calories that Bella didn't get because the tubing became unhooked or something leaked.  No matter how hard you try, it's inevitable.  Eventually, if you have a child on a tube feeding, you will feed the bed.

You realize how much your life has changed, when you are in the middle of Disney World, hooking up your daughter to a tube feed, and you don't give it a second thought.

4.  How has your attitude and friends/families attitude changed toward tube feedings?

I can't speak for our family/friends attitudes, but I was so upset about Bella getting a feeding tube.  Not because of the tube, but because it was an obvious indicator that some things (like swallowing) are worsening.  It was one more thing that makes Bella different than other 2 yr olds, and one more area that people don't understand. 


I still don't love the g tube.  It still makes me angry and sad some days.  It's a pain when you go on vacation or a day trip...but I'm so very, very grateful. 


 I'm so thankful we have a way to feed Bella without stressing her body more.  I'm grateful that at night when she gets 26oz of formula, she gets it safely, without causing pneumonia or damage to her lungs.  How scary it must have been for Bella, knowing that every time she drank liquid, some would cause her to choke or go into her lungs. I'm grateful she was born in 2009, and not 1909 when tube feedings didn't exist.  I'm grateful the feeding tube has helped her grow stronger, happier, and sleep better at night. Seeing this smile, makes me think we made the right decision.

 5.  Explain a situation where a clinician didn't know about tube feeding and it's impact.

I'm not sure how to answer this one, since Bella has only had a g tube for a few months.  We haven't really run into many clinicians yet that don't understand tube feedings.  I know we will, but so far, we've been lucky.

6.  What would you like clinicians to know about day to day life with a feeding tube?

So many doctors, nurses, and therapists told me the feeding tube was "no big deal", and maybe it wasn't to them, but for the families it affects, it's a HUGE, HUGE deal. Not only were we putting our daughter through anesthesia again (which is a big concern with Bella), but our entire routine and day to day life was affected. Not to mention all the hopes and dreams we had which needed to change.  Not to many people get pregnant thinking "boy, I sure hope my child gets to have a feeding tube"  No, it's not the end of the world, but it's not a walk in the park either.

I also wish clinicians would understand how hard it is to be a parent of a child who is nonverbal and tube fed.  Babies, if their stomach hurts or they aren't hungry can refuse the bottle.  Bella, has no choice.  We plug the tube in, turn the pump on, and it's going into her stomach.  She can't tell me if her stomach hurts, or if she's nauseated, or if she's not hungry.  It beaks my heart, and it's one of the things I worry about the most.

This was a long, long post.  Thanks for bearing with me!  If you're still reading..thank you!  I hope it helped someone understand a little more about life with a child who has a tube feeding.  If anyone has any questions, I'll be happy to answer them, either in the comments or by email. 

 Awareness is a really wonderful thing. 

Here is the 2012 video for feeding tube awareness week.  Take a minute and watch the video (our family is in it)! 

One of the best quotes I've heard in a long time was from a friend of one of the people responsible for this video.  It said "I paused every picture of the tubie families...not an anguished, burdened, sad face in the 3:50 video..all blessings."

I couldn't have said it better myself.

Make a video - it's fun, easy and free!
www.onetruemedia.com<

Still here...

We are still here-I promise!! It's been a busy few months, but for the most part we are all doing well. Here's a recent pic of the little miss: (look at the end of the post, I still don't know how to move pics on the mobile site. Sorry).

And if you didn't see me post this on Facebook, Bella's story and picture is up on the inspiration through art page! Here is the link: http://www.inspirationthroughart.org/meet-our-heroes


More updates coming soon! :)

Oh The Places You'll Go...

The little miss the other night at 1:30 AM.

She looks sleepy, doesn't she?


Yep, I said 1:30. How can you be mad at her though, with a smile like that?

Yesterday was a big appointment day for the little princess. A neurogeneticist appointment, GI appt, and dietitian. I keep trying to tell Bella that I will gladly have girly days with her that don't involve medical appointments.

It was tiring, not only emotionally, but also in general! The Cleveland Clinic is huge, and our appointments were on opposite ends of the campus

Not sure this will interest anyone, but here are some of the highlights (or lowlights).

Bella is not gaining weight (which I knew...). She's still the same weight that she was in July. She has grown in height, but the concern is that she won't keep growing. If Bella's only meeting her minimum amount of calorie needs, (which I'm pretty sure Bella is), height will begin to taper off. On a positive note, her growth curve looks awesome! Yay me! (No, I'm not being sarcastic, it really does look good for the last 6 mo). :)

I've avoided it as much as I can, but we are scheduled for a gtube on October 20th. So for everyone who has been pushing for Bella to have a tube placed...you win (and for the record,-even though I should probably let it go,-I think it's it a lot easier to have an opinion when you are on the outside looking in. It's not your life, your family, and your daughter who will be affected).

On a positive side, feedings will probably be a lot less stressful for Bella, and we'll only be spending 20 minutes feeding her, as compared to an hour.

The neurogeneticsist is always the stressful appointment for me. Bella's MRI showed hypomyelination, instead of delayed, so that changes some things. Myelin is the protective covering over the nerves, which helps them to transmit signals. Delayed myelination means there is a delay in the formation of the myelin. Hypomyelination on the other hand, means the myelin is there...but the consistency and quantity of it is abnormal.

Hypomyelination is somewhat rare, and still pretty new. There's so much which still just isn't known. The National Institute of Health in Washington DC, has an expert on hypomyelination, and is interested in seeing Bella, if we agree. They would pay for the visit and testing, we would only be responsible for lodging and transportation to get there.

NIH? Washington DC? Good grief, Bella.....At this point, nothing surprises me anymore.

Our Dr did order two more neurological tests, both of which take about 4 months for results. (sigh). He also wants us to see another opthamologist, and genetics at Cleveland.

So..I'm tired. I did treat myself to a pumpkin spice latte and some sangria. (Not together-haha). There's a lot to process and think about.

One thing's still the same. No matter what worry, stress, fear, and tears this little girl puts me through-she still rocks my world.

Even at 3:30 am.
(Yes, this is another night, and yes, it's 3:30)

Target Trip!

This may not seem like much to a lot of you. But to me....it's priceless.

Shopping carts are my greatest source of frustration lately. I've been dragging the infant carrier into the store, and attaching it to the front of the cart, but it's a huge pain in the behind. It's ridiculously heavy for one, then you have to hoist it up in the cart, and hope you actually get it connected on the first try. Bella doesn't really fit in it either, so her legs are hanging out, and she usually looks like she's going to cannonball out of the seat at any time. I'm usually looking a little frazzled, sweating, and not to mention the pleasant words that are usually running through my mind before we've even hit the entrance of the store. You know words like "beautiful" and "glorious" and "serenity". Ahem.

Bella doesn't always have the trunk control to sit safely in the front for longer than a few minutes, but a recent post from a friend (Thanks, Kelly)!, inspired me to try the shopping cart again.

She did great-even if she was slouching a little bit! Sure, she had my purse on one side and a pack of wipes on the other..but it's a start..and it made my whole day!

Good job, Miss Bel!!!

Clearly, the little princess loves Target as much as her mother. Sorry, Craig.....

An Update

A quick update...I have a much longer blog entry that I need to write and post, but as usual...there just aren't enough hours in the day.

And as usual..the drama with the little Miss continues.

We have a spinal tap under general anesthesia scheduled tomorrow to test for more big, scary words which our neurologist calls the "worst-case scenarios". Blech.

The last time we attempted a spinal tap a month ago, Bella managed to get it cancelled due to her coarse lungs sounds and the determination by the anesthesia team that she was/is an "anesthesia risk". Grrreeat.

I'm a tiny bit anxious, may be having a few heart palpitations, and really just want this over with. Do you remember Bella's last experience with general anesthesia?

Well, she decided to stop breathing.

Honestly, the child is a drama seeker.

So...prayers please for our sweet Bella, and this anxious mama's heart.

Thanks. :)

In other news with the drama queen, it looks like we are heading down the gtube path. I have so many mixed emotions about the gtube, which deserves it's own post. We've avoided it for a year, but Bella's swallow is getting worse, and I'm not sure we can avoid it at this point.

Everything we've been through with Bella, and I'm falling apart about a little gtube.

Sigh.

The pool is open, the boys are out of school, Alex turned six, and summer is here. Not to mention, the fighting between the boys is going full force. Some things never change.

At least it's normal. We really, really like normal around here.

I'll be back soon with more pictures and a longer post. I'll leave you with one of the many Alex quotes that have made me laugh in the last few weeks.

Alex: "You know how Drew and I always fight?"

Me: "Oh yes, I know".

Alex: "You should go to stop bullying speakup.com and report him".

And you, Mr Alex, watch too much TV.

Just sayin'.

Have a great Thursday everyone!

Blessings

*To those of you visiting from Kelly's Korner..welcome. This is a post I wrote a few weeks ago, that so describes where I am right now in our journey. Bella is 2, and as of now, we do not have a diagnosis. She certainly keeps us on our toes with all the drama she likes to cause! There's been many sleepless nights, tears, and "I can't do this anymore moments" since we started this journey 2 years ago. Despite all this, I am absolutely, overwhelmingly, head-over-heels in love with this little girl. Thanks for visiting.*

A good friend told me about this song last week, and it's quickly become one of my favorites. (Thanks Bobbi)!




We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise


I can so identify with this song. To say these last two years have been hard would be an understatement.

I don't understand the whys and frankly, it makes me so angry at times. Why us, and the question I can't wrap my head around-why my child, and not me. I would do anything if it could be me instead of my precious Bella. Let me be the one who works so hard for everything, who endures countless tests, needles, and therapies-not my Bella.


For so long, I wanted a little girl. A little girl to do girly things with: we'd have tea parties, play dress-up, and go shopping. We'd have mother/daughter lunches, paint nails and share giggles, while the boys went golfing or fishing. In my most difficult (and honest) moments, I feel as though God says...Here, I gave you this precious little girl, that you love more than anything...but instead of shopping and tea parties, you'll have therapies, tears, dr visits, procedures, and fear. So, so much anxiety and fear. And you know what? That makes me a little angry...and sad...


Despite all these less-than-healthy thoughts though, I'm starting to realize there are blessings. The first one being this girl:





I'm crazy about this little girl. I love her more than I ever thought it was possible to love a child. She's been through more than any 2yr old should have to go through, and through it all she's kept her sparkling eyes and magical smile.


I love her brothers, so so much, and love how they interact with her. They don't define her by the fact that she's not sitting independently or walking...they just love her for being Bella. (Granted, it probably helps that she's not getting into their toys, but still)!


I've met some amazing people and moms, and have some great friendships with people I've never met in real life. I've realized which friendships try to "get it", and which don't care, and value so many things I used to always take for granted. I am realizing that we may not be having dress-up parties, but we can still have giggles.


I don't have a nice little bow to wrap this post up with, because it's a process, Some days are harder than others, but I'm learning (slowly) that there are blessings in the raindrops.

Do I wish we didn't have all these medical issues? You bet. Not because I want to change who Bella is, but because it makes my heart hurt to see everything she goes through. I can say without a doubt, that I wouldn't trade my Bella for a million tea parties.

I may not have ever imagined the rain, but I'm learning that some of the best things in life are the things you weren't expecting.

Plans For The Week

(It's Sunday now...I meant to post this on Tuesday, but got distracted mid-post and it never posted. So here it is...5 days late)!

It's Tuesday...and I'm really, really hoping for a boring, calm week.

No hospitals.

Our own beds.

(Hear that, Miss Bella)?

Last week was a week filled with fevers, dr appts and hospitalizations (yes, again).

I don't have many pictures to share, since my camera died. Well..technically died is probably not the right term...more like, ahem, was killed.

OOPS.

Apparently, you can't dump a whole cup of water in your purse and expect your camera to survive.

Who knew? The hubby was thrilled that his wife was such a moron, genius. I do have pictures uploaded from my mom's camera, and am so tempted to post the picture of my mom driving a 3-wheeler around Pinecraft in Florida, but I'll resist. (Your welcome, mom). I do want you to babysit again for me.

Remember that.

So...here's what we're hoping for this week. A specialist appt in Columbus for the princess, baseball games for the boys, and a chance to catch up on laundry for the momma.

It's the little things. :)

I'll leave you with one of the last pictures I have off the old camera.

A girly weekend trip to IKEA taken a few weeks ago. (Thanks Craig for babysitting).



Thanks girls, for a fun weekend, that I so, so needed.

Finally...Another Post

I apologize for the lack of blogging, but well...I'm tired.

Some weeks are overwhelming, and this is one of them.

What have we been doing the past few weeks?

Let's put it this way: Tylenol, Motrin, feed Bella, repeat. UGH.

Both boys were sick with what we now discovered was influenza B. Yep, ironic since we all had the flu shot.

Thank you Jesus for protecting Bella and not having her get the flu.

I find when I'm not blogging, it's usually because I'm stressed or anxious, or have a million and one thoughts rolling around in my mind.

I've been a teeny, tiny bit anxious this week. I'm worried about Bella's test results, even though I haven't even been able to get the blood work done yet. (So, completely frustrating). It's a long story, but let's just say it involves lots of driving and a complete waste of a day. Basically, the testing we are doing right now is worst-case scenario stuff. Stuff that we're hoping we can rule out, but reading about it gives me a serious case of insomnia and a sick feeling in the pit of my stomach.

Wait...maybe that was what I had for dinner.

I digress.

I hate that our life revolves around therapies, dr appts, and developmental goals. Blech.

I'm worried that Bella is having seizures, and what that means. I'm worried every time I feed her, and she gags and chokes. I'm worried what the raspy sound in her chest after eating means. (I probably know what it means, and it's not something the feeding clinic is going to be amused by next week).

I'm grumpy at well-meaning therapists who ask "what new things is Bella doing, and what have you been working on this week?"

Um..well....really, I've been working on making sure that all the kids are breathing, fed, and loved.

Oh, that wasn't one of Bella's therapy goals?

Whoops.

I guess there's always tomorrow.

Because this has been bothering me, I'll post it today, even though I'm late.

The "R" word. YUCK. I hear it in conversations all the time, and it makes me cringe. It's insulting and degrading, even when tossed around in casual conversations.

"Dude, that's retarded".

"I must be retarded to have done that."

"Stop acting so retarded."

Read this.

Think twice.

That's all. :)

Happy Wednesday peeps!!

HOME!!

We're HOME!!!

I'll explain the events of the last few days soon. Probably boring to most of you, but I've found if I type them out, I have a record of them. My memory isn't what it used to be folks.

What a long, tiring 3 days. Oh, and did I mention Bella STOPPED BREATHING during her MRI?

The child is trying to kill her mama. Good grief.

She's fine, I'm, well, frazzled...and so, so thankful to have all my family under one roof.

Hospital stay=$5,000.
Parking=$20.00
Cost of Ativan prescription for mother since third child is a drama queen=$10.00
Coming home to be smothered with kisses from two boys=priceless

So.Not.Fair.

I need to make this quick-Bella is restless and starting to wake up.

Want to know what we've been doing the last few days?

In a nutshell: ER, ambulance ride for a transfer to different hospital, hospital admission, spinal tap, catheter, more pokes for bloodwork than I care to count, IV's, EEG monitoring and an MRI.

Yes, all for Bella.

I'm exhausted, and my poor baby is done. D-O-N-E, done.

We have an MRI scheduled this afternoon under general anesthesia. I'm so nervous about the results. I know she needs it, but it doesn't make it any easier.

It's a long story..but basically, Bella had two "spacing out" episodes at home Tuesday night, and was not acting like the Bella I know. When I took her to therapy and the pediatrician the next day, she was acting very sleepy and hard to wake up. Her depakote level (her new seizure medication) was found to be toxic high.

So the question remains...is her behavior the result of her depakote level, or is something else going on.

More questions...few answers...more pokes/tests for my precious girl.

And...let's not forget...we are on camera 24hrs/day AGAIN.

Apparently, life at home is very, very boring for Bella.

I'll update as I know more.

Valentines Day

So...I'm tired of having words like epileptic encephalopathy (boo, hiss, yuck) swirl around and around in my brain, zapping my joy and making me an anxious mess. I'm tired of wondering what impact all this will have on my sweet girl and her future/development. Frankly, I'm just tired of being awake at 3am with a thousand unanswered questions and big old panic attack.

Life goes on...whether I'm sleeping at 3am or not. Let's move on too, shall we?

Since Bella was in the hospital on Valentine's day, I was a little bummed she wouldn't get to wear her Valentine's outfit. Hey, there's so much I can't do with Bella, but I CAN buy her cute clothes. Don't judge me.

We did manage to wear it to physical and feeding therapy on Wednesday though. A little over the top for a therapy session, but oh well. The feeding therapist didn't mention the word g-tube one time during Bella's appt, despite her only gaining 3 oz. I'm totally giving credit to the outfit.

Before all the drama with Miss Bella, I had signed up to help with the 2nd grade Valentine's party and bring sweets. (Yes, I do have 2 other children-they just have been a little left out of the blog lately). I really wanted a cute yummy snack to bring. Now, you should know, I am NOT creative. I hate scrapbooking, doing crafts, etc. In fact, just typing the word scrapbooking makes me feel all hot and a little,well, twitchy. Is that a word?!

Thanks to Heather though, I was able to come up with a very easy, creative snack. Cookie lollipops! Thanks, Heather!! They were so simple, and were a hit with the 2nd graders.

Ahh...I can check off "make something instead of cupcakes to class party" off my bucket list now.

Looking back over my pictures of the last few months, I noticed I have very few of Drew and Alex. Whoops.

Here's what I have (someday they will be thrilled to see these): Here's Alex being, well...Alex.

And here's one of Drew sporting a beard and glasses. They were drawn on him with makeup for a challenge in the game "You've got to be kidding." Let's just say, he was not amused.

In fact, I think he may have refused to finish the game. It probably didn't help that his brother thought it was hilarious.

Two of my friends gave me these verses this past week. I love them, and I'm trying to remember their promise:

"Fear not, for I am with you; Be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10

"Those who live in the shelter of the most High, will find rest in the shadow of the Almighty." Psalm 91:1.

Thanks, Tammy and JoEllen!

Now, if only I can remember this during my 3am panic attacks...sigh.

I hope you all had a great Valentines day, filled with lots of love, and of course, cookie lollipops. :)