Gabriella's stroke, one year later

Preparing for this blog... I read back into my own blog entries from the days of Gabriella's stroke. I am sitting her crying tears of grief as I re-watch what she went through the morning of September 25, 2009. I'm not sure what I want to even say about that day.

Gabriella's Stroke blog entries: STROKE

I posted a prayer that night that kills me to read again. This poor mother, her poor child, what if they lost her? She was already going through so much with her pending heart transplant. My heart breaks for them. Oh, wait, that was us....

September 25, 2009- God, heal my baby. Shatter the clot with your insurmountable power. Give the deprived areas of her brain the miracle of life and function that only you can provide. Let her sweet voice be heard by everyone she encounters, and her hand hold mine on its own. Let her change the way people think about life, or their children. We have full faith in You and Your love for her. Amen.

I am not reading back because I don't remember. Over the last year I retained what I needed to, the details and stats, and I pushed forward with finding her help to retrieve the skills she lost. I think the reason that I get so horribly emotional reading back to those days is because I detached myself from the pure agony I felt as a mother watching what she went through, because it was haunting me so terribly. She almost coded. We almost lost her. Post traumatic stress disorder at its maximum. My way of coping with the PTSD was to keep facing the steps in front of me so I would not have to keep facing the emotional agony of what happened, no matter how hard it was to accept what happened to her. It doesn't surprise me that I dealt that way.... I lost my dad at 13 and my re-dad at 21... and both times I did the same. I was haunted by the stress and emotion of it, so I focused forward and how to help my mom get through everything. I didn't take time to sit in the moment... it hurt too much. Of course, I am not saying this was the best route to manage... but it did keep Gabriella focused on recovery as well. Regardless, the pain was deep.....

September 26, 2009- I cannot even begin to express how badly I want to hear her voice again.

Gabriella has spent 365 working hard. I wondered when she was still in the hospital weeks after her stroke where she would be in one year. I honestly had no expectations, no preconceived idea, nothing. I remember her eyes with a trapped look, her 'lazy arm' she couldn't move, her grunts and screams when she wasn't understood. This experience started a new form of understanding between Gabriella and I. Our relationship changed. Before her stroke she was very strong and independent and didn't even trust me to remove a band aid, much of it came after I had PJ and she had to share me. I even got a mothers day card from Paul that May and it said something about hoping Gabriella and I become closer. I loved her with all my heart, she was my baby and made me a mother. Our relationship just had a dynamic of independence. After stroke, I was there to read her next 5 thoughts to help lessen her stress... which was not easy for her to be dependent. I was thrown into the position of being her constant nurse, installing ports and giving injections in them into her belly, explaining procedures and being by her side for every one of them, keeping her doctors all on the same page after a crash course in medical training.... and she trusted me 100%. Gabriella and I have spent the last year planting roots of a relationship that will be unlike any other as we both grow older... and I feel blessed by that.

Never would have I thought it was possible for someone to get back as much as she has in just one year. From not being able to swallow or move her tongue and having only conversations through me as her translator, to having a (while not YET grammatically correct) conversation with anyone she wished to speak to in just ONE year.... THAT'S miraculous. She didn't have the luxury of being able to write or read to communicate... yet God built bridges for her to be heard.

February 8, 2010- Thank you to everyone, who from September 25th until today had their prayers on Gabriella. Those deep and heartfelt cries to God to take the clot and destroy it worked! And to know that those prayers will now be on her new heart and the surgery it entails makes me so excited to see God work again in that area!

Gabriella has overcome the odds in this past year. Her Neurologist told me a couple months out that she was at the max potential for her arm function at about 30-40% use.... and now today, with about 75% use, she proves him wrong. We were told she had a strong probability of cognitive problems, yet she tested a whole year ahead of herself this past January. We were told she would most likely have an issue retrieving words, and she did suffer from that as her words came in larger amounts, but her new sparkly heart has allowed her brain to function at a higher level and retrieving the words she wants to say is so minor it is hardly noticeable.

May 23, 2010- For the first time in over a year, I feel like my daughter is full of life, and not dying. Like we have a future beyond fear. We have rounded the top of the steepest point of the mountain and are looking at the beauty of what is in front of us. Like Miley Cyrus says about her song The Climb, which has been our theme song through this journey...... "Life's a climb, but the view is great."

Not only did she overcome this life changing stroke.... look what she has achieved through her heart journey. Gabriella's story is something amazing, and though I always get flustered when people mention it, the more I think about everything she has been through and the more I read my old entries, maybe a book isn't that bad of an idea.

So now on this 1 year mark of her life changing stroke, and on the day we return home from her heart transplant, God has answered the cries of our hearts. He loves, protects and heals... both here and in heaven. His reasonings for allowing things like strokes and transplants or even taking little ones to heaven are unknown, but we continue to praise God in this storm!

Finding Peace in the Storm

Paul & I were able to share a short account of our journey with Gabriella at church on Sunday Labor Day weekend. I wanted to share it with you all....

Finding Peace in the Storm

We want to thank the congregation of Restoration for letting us tell our story and all of our amazing new friends we have met there! They have all been a major blessing to us as we have been in California for the last 4 months.

Ten part 2

I promised back in February on this post: TEN that I'd post a follow up on Gabriella counting to 10 crystal clear and on her own..... please visit that last blog to see her before video!

And here she is now, 6 months later, counting to 10 without prompting and super clear! I am so proud of her speech progress!!!! (her hesitation on 10 isn't that she doesn't know it... it is that she has a hard time grabbing the right word for it)

Gabriella starts Kinder!

Ok, so this is much unlike all of the other 'first day of school' pictures you will see on peoples blogs, of kids in their new outfits, freshly washed hair & fancy backpacks. I had dreamt of that day I'd take that same picture of my curly haired princess. It probably would have been 2 weeks ago when the schools in our town started class.

Granted, I still wish I was taking that picture. As I watch all of my momma friends I bonded with so closely 6 years ago in our pregnancy stages send their big kids to Kindergarten, I envy their experience.

Of course, it isn't me unless I focus on the alternative. Sure, I can sit and sulk, or I can find joy in what we have. Gabriella is alive, here with me, and I am able to spend all day with her and teach her the basics myself. We started home schooling today, and I took my own unique picture of her.... one you won't see on many blogs!

I spent most of the lessons evaluating her. Our Kindergarten experience is far too unique anyways, given her stroke gave us quite the hurdle to overcome. Not only do we need to learn all of the normal K things, we need to work on getting her talking at a K level! And when she learns something, she may know it but not be able to tell me she knows it... so we will focus on our own personalized schooling style through the next year to get her on track. Gabriella thrives on praise and shuts down on failure. She is much like me, and if she does not succeed she is closer to throwing in the towel than pushing on. With her speech delay, I think I can better maintain that at home where she isn't comparing herself to the other kids and can show her the one on one she needs to succeed through her own special hurdle.

Home schooling will also serve in our favor due to her sporadic yet frequent doctors visits and keeping her healthy in this highly immunosuppressed time. We will return back to Arizona 2 months into the school year, where she'd miss the beginning of school. Also, flu season is right around the corner... and with her immunity being so low and 5-6 year olds being cootie bugs, we just CANNOT risk that.

Kindergarten is not required in Arizona, so my home schooling is not exactly necessary. But had we been home and had she not walked the journey she has, she would be going with her cousin to K and learning all she needs to in this time. I want to treat K like it IS required and get her ready for 1st grade, just in case she wants to go to school and not be home schooled at that time. When we return home, though, the school system will come to our home and assist us with therapies as well as returning to clinic speech therapy with the lovely Mrs Lisa.

With the help of some awesome HSing friends, we built our own little lesson plan for the year with a combo of programs I bought. We started today with writing where I identified how many letters she could write based on my verbal command as well as learning how to write the 'new' letter F. We did math (counting) where my worst worry was made true. Since her stroke, her hardest thing to retrieve has been numbers... she has only retrieved how to count to 5 since her stroke 10 months ago, and even though we ONLY added the number 6 to that today she still cannot remember it. This is due to her expressive aphasia so I am going to need to get very creative to teach her counting (song?). She then worked on reading, which I think is going to be her strong suit. She already has mastered 2 new letters sounds in one day, so I am super excited to see how she progresses with that! Our bible lesson & art/science were on hold because I need to access a printer to get my materials, so hopefully tonight I can run and do it! And we have a 'basics' lesson at the end of the day where I will do colors, shapes, money, time, comparisons, etc with her. Today we evaluated how well she could verbalize her colors and shapes... again a hurdle in itself because of the speech delay.

So that was our day! I figure we will have school days 3-4 times a week, depending on doctors appointments. And I'm super excited for the next year!!!!!!!!!!

Wanna see her moves?

Gabriella's video of her tricking mommy in the hospital post-transplant was a hit. I received some of the BEST stories as a result of the super amazing LIFE her little face possessed.

Well, I shot some pretty adorable videos of her last week, on our adventure down to Downtown Disney one evening. Her robot video is a hoot, but there nothing like her riverdance/ booty shakin' moves in the 2nd one!

ENJOY!!!!

CHECK OUT THAT ENERGY! LOL!

In the Morning

I had a sweet new friend send me an email the day Gabriella was released from the hospital, one month ago today. We sat in her room just hours before taking our baby home, and watched the story and listened to the song, weeping. A story of not only a CHD hero, but an endless faith in God.

It was then that we knew, we were in the morning.

The story... 10 minutes and a MUST watch.



And the full song.

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

BEFORE THE MORNING LYRICS - JOSH WILSON

Cardiac Catheter is Scheduled

So we got word this week that Loma Linda wanted to go ahead with the heart cath for Gabriella. They don't have any concerns about her having another stroke, though I will be far more 'cautious' in that thinking. I got everything scheduled today. We will skip our May clinic appointment and head over in June for clinic and the heart cath. (busy hospital, skinny schedule) Daddy will go with us for this trip, and we will take PJ, so we are hoping to have a couple relaxing days in California together before the early week procedure.

I will not say I sit here going into this with as much comfort as I typically have, but I still sit here with as much faith. When they do a heart cath, they go in through the femoral artery in her groin and send a tube up to her heart that they can thread in various tools and cameras thru. They will measure the internal pressures of her heart and lungs to check for things like pulmonary hypertension and high blood flows of the heart. After the procedure, she must lay there, completely straight, for up to 6 hours in order for the artery to reseal (form a clot= a necessary evil). I am curious to see how this time is lengthened due to her being on aspirin? This is the same procedure they did April 24, 2009 to find out why her heart showed enlarged on the echocardiogram, marking the beginning of this journey. The hardest part will be that Paul and PJ will have to wait for us back at the hotel, since PJ cannot go into the hospital. We are still exploring our options there. But this needs to be done so they are prepared for any possible complications she may have in transplant, since kids with RCM present with lung issues most of the time that can make recovery a difficult time.

I have very specific prayer requests for the next month for anyone willing to take this on. So much can happen in 30 days. The first request being that if she were to get her new heart before this cardiac cath happens, that there are no unexpected complications. The second being that if we do make it another month with no heart offer, that she stay healthy for this procedure and the cath come back that her lungs are strong and healthy. And the third, that Gabriella is protected from any chance of stroke with this procedure. I can't even begin to think... she has already lost her speech and right arm... so I beg you to just pray that God spare her any more struggle from stroke repercussions.

To piggy back on this entry, Gabriella could just use some overall positive prayers. This last week has been trying. Paul and I have both noticed a change in her overall stamina and being. Last night playing with her cousins was the most interactive she has been all week, but it completely beat her by the end of the night and into most of today. She still smiles and gives that precious "uh-huh" in a cheery tone when we ask her if she is okay, but you can see it in her eyes. She is giving us grief eating again and is visibly loosing weight again. She has been off the appetite stimulant for 2.5 months now and its starting to be noticeable. If I had to plot her last week on a chart compared to the past 6 months, it would be a definite decline overall. And along with all that (probably DUE to that), and to take a selfish sentence for me, I have been having the most wretched nightmares that cause me to force myself awake for a while. It's been a difficult week. Granted, we are so very lucky to be a year into this now and her not be in a deeper heart failure than she already is. But it does not make the slow decline any easier. We know it is going to get worse the longer we wait for her sparkly new heart.

Gabriella's arm

OK! Good news! Loma Linda approved the med today that out rehab doctor prescribed Gabriella last week! You can read more about that appointment on the Journeys in Speech post from last week.

He prescribed Baclofen for her, and Loma Linda feels it to be a safe pre-transplant med. Her arm issue is what he called spasticity, which is where the nerves tell the muscles to constantly contract. The doctor seems to think her stroke damage might have slightly affected the basal ganglia... in turn causing this spasticity. This explains why her fingers are most often curled, especially when she goes to isolate her fine motor skill finger movement. She curls her fingers to pinch at something small or hold something in her hand, and he told us it is because they are over tightening. It is something that is present in people with cerebal palsy or multiple sclerosis... but in Gabriella's case is an acquired disorder in result of her stroke.

As I read about Spasticity, I am discovering that it does in fact involve speech in some cases. This makes me want to go to the pharmacy and fill the Rx, like, now. I can't wait to see what this does to help her! And for the record, yes, I have done research on the med myself... :)

Speaking of speech... here are Gabriellas 3 newest words! Excuse her super amazing hair. She can't help how awesome it is in the mornings.

Journeys in Speech

Tuesday I went and registered Gabriella at our local elementary school with hopes of getting in-home services for both therapy and schooling. I am planning on homeschooling her for Kindergarten anyways, since she won't be able to start when all the kids do in July or attend a public school setting for a while. She qualifies and things look great, but everything is was put on a sort of "hold" until we get back from transplant....

I go to my PO Box to grab the mail, to find another denial from the Department of Developmental Disabilities. We have been trying to get her accepted through them to get her an Augmentative Communication Device and also for some possible additional therapy support. This ACD is a little computer that will allow Gabriella to choose different symbols to formulate a sentence and will speak it for her. Not only will it help her to express what she is trying to say to people who don't get her special way of talking, but it will also assist her in learning to speak again in the proper way by speaking the words she is trying to communicating and her mimicking them. We are continuously denied because they do not consider loss of speech/ apraxia &aphasia, a developmental issue. According to them, she it would be an issue if she had never been able to speak... makes sense, right? Not. They took the blurp from her Speech Eval that she was behaving age appropriate as a marker that she was comparable to her peers. The feelings I felt when I got the repeat denial are not rated for this blog... so I'll just leave you to your imagination.

I got my wheels moving right away and contacted the hag who denied us to let her know what I thought of her and her desk job, gathered my appeals information, made an appointment with her rehabilitation doctor, and researched angles to help me fight.

Today we went to see the Rehab doctor. Thank goodness we got in so quickly. Like myself, he was pretty much disgusted that they would not approve Gabriella. He got me the name and number of an organization that should be able to help us get evaluated for the device, but also is writing his appointment notes to be worded in a way that the state will approve her. It is all in how they word things. The doctor stated exactly what I've been saying..... that Gabriella is most definitely not at the level of other kids her age. Yes, she is doing AMAZING and compared to 7 months ago, she is a true miracle in her recovery. But stand her next to another 5 year old and there is no need for a professional to tell you that she is now extremely delayed. And there is no way to tell is she is on track for her alphabet, reading and writing because she cannot communicate... as far as we know she doesn't know any of that and is learning it right now like it is the first time. Also, no one knows how this will affect her long term. Many times, people with a brain injury like hers have difficulty reading and writing. How can someone self-suffice if they cannot communicate, read or write? Thats not a disability? Basically, what the state wants is for you to get to the point of no return before they help, instead of assisting in the real-time treatment of a child. That, I'm not satisfied with.

He also told me to peruse the school system and their evaluations now. It seems as if they cannot deny her the treatment, so I am going to push to get it all started. There is a chance too that they may be able to supply her with a device through the school system, given there haven't been major cutbacks to that area of the district.

So we have a few options now. I have a doctor in my corner to advocate for Gabriella, and have an organization I can contact for help or at least tips on fighting for this... as well as the school system I am going to push on.

Besides the business part of our appointment, the doctor was impressed with Gabriella. He discovered something with her arm... and I wish I could remember what he called it right now, but basically that her muscles and nerves are contradicting themselves. When her muscle contracts to make a movement or a fine motor skill, she has something prohibiting that motion from being carried out properly. He prescribed me a medication that should help with relaxing this action to help her retrain her hand to work properly, without affecting her heart or ability to undergo surgery. I am in complete awe of his ability to diagnose this (I didn't know there was anything to even diagnose!), and it sounds like it might be something we can improve on! And he also said there is a slight chance it might help her speech by relaxing her mouth nerves/muscle contradiction from holding back the sounds her mouth is trying to make. Once I get his notes and see what it was exactly, I will repost because it was seriously fascinating, and it sounds very vague as I type this here. Next step is I have to call Loma Linda and see if they will approve her to take this medication... but I am really wanting to give it a try!

Like I told my mother in law today, I'll fight for this little girl until the day I die.

Normal? To who?

While Gabriella and I were at the aquarium in California, we were there at the tail end of probably 20 field trip groups. There were kids everywhere with their matching shirts or buddies. The ticket lady told us by 1-2pm they all clear out, so until then we had to just deal with the crowds. Gabriella's favorite thing was touching the animals... bat rays, sharks, starfish, etc, but it was difficult to get to them with all the kids around. While we were waiting in line for the coral & star display, Gabriella and I were having one of our special conversations- the ones only her and I understand. One of the field-trippers, possible 8 or 9 years old, had been observing our conversation, staring the way kids do best. (the way kids stand there and stare to scope each other out cracks me up). When I gave him a smile, he asked me "is she retarded or something?"

I am guilty. I used to use the R-word in casual conversation, to substitute for the word stupid or dumb or ignorant. It was a bad habit picked up from peers and, like most others, never gave much thought to the reality of the word. It wasn't until I was faced myself with a child having a developmental delay (acquired, but nonetheless it is a delay) that I FELT the hurt in the word. I began to fear what Gabriella would face as she got older, not being able to talk like other kids. I could picture the taunts and words she would be faced with from uninformed kids. I learned my lesson on the R-word.

I kept this all to myself for about a week, until I saw on Twitter a tweeter called @endtheword and they were running a campaign to spread awareness and stop casual usage of the R-word. Then I read a blog entry from a woman, titled 'Reasons to not use the R-word'. I felt compelled to repost the updates they were putting online. A friend asked me if people really do still use that, and I mentioned our experience. I didn't want to make a big deal out of what happened with Gabriella, because I was dealing with a pain in my own heart about the day she realizes what that word means.

What did I say to that little boy? Sure, natural instinct would be to get angry.... but I'm convinced that boy didn't ask me that to be hateful. He asked it because he hasn't been taught what the word actually means, how it hurts and has heard too many people use it casually, so he saw someone different and felt it appropriate. I told him that Gabriella had an injury in her brain that took her words, and she was working very hard to get them back, but she was just like other kids. He just looked and said "oh." For that moment I hated that word. He used it because he has learned that the R-word can be casually used. Yes, being mentally retarded is a real condition, but it is not something people should go around using casually to jazz up a conversation. It would be like using the word 'cancerous' as a word substitution when poking fun. That's not funny, is it?

I had never intended for this to make it to my blog. I don't want to ever place Gabriella's condition over people who have things so much harder. Sure, Gabriella has a weak and dysfunctional arm, and she cannot talk properly, but she can more than partially recover with hard work. I have lovely friends, in real life and online, who have kids with physical or mental limitations that cannot be recovered from. I look up to those moms who care for those kids. A local friend, Sherry.... an online friend, Heather (who posted a wonder blog entry about explaining handicap to kids).... and so many more.... have become heroes in my eyes. To see the dedication to and positive outlooks on their kids with CP or Downs and other limitations reminds me of the beauty of being 'imperfect', yet 'perfect' in God's sight. And my passion for the R-word being removed as an everyday, casual word to replace other demeaning descriptive words is not just because I have and will face it with Gabriella, but because I can only imagine the pain other mothers feel when their child is taunted with it as well. When I think about Gabriella as she becomes a woman who will still struggle with her speech, I can only imagine the pain and depression she, or any adult with delays or handicap may feel, by overhearing such a simple word to the average person being used when it had debilitated her entire life and she had fought so hard to conform to 'normal' society and overcome her delay.

What if WE are all abnormal? Maybe, in God's eyes, that child with CP or Downs, or my daughter with a failing heart, are normal? Society has placed guidelines on what is normal, but what would happen if we all considered that a certain size or healthiness or appearance is not what makes you normal, but rather the way you live life and love people are what distinguishes people as normal or not? God created us all perfect to His design. I think it is our job to teach our kids, the society of the future, to respect that.... Parents, lead by example.

Ten

Gabriella is a smart, smart cookie. She was always on her game when it came to speech. As anyone who has ever been on my blog before knows, that was all ripped from her September 25, 2009 when her stroke attacked the very spot in her brain that operate her speech.


She has gotten to the point today, just shy of 5 months later, where she can say approximately 30-40 words and phrases in context and accurately (including Disneyland, which makes me the happiest mommy on earth). I couldn't be more proud of her progress! And to think that when her stroke happened, she had no control to even open her mouth or stick out her tongue! Granted, if she wasn't like me... stubborn and a perfectionist... she'd probably have more. But it'll come.


I had to share a video I shot of her counting to 10 this past weekend. Most of Gabriella's words are crystal clear, but as you can see from the video, the words counting to 10 are not "perfect"... yet. The whole point of therapy is to train her mouth to move in the proper motions to get that sound and word in her head out accurately. The more and more she practices, this counting to 10 will be crystal clear. And she only follows my prompts, not because she doesn't know how to count to 10, but to train and prompt her mouth to move in the right sequence for the word itself.



I'm hoping to post a followup video of her counting to 10 solo and crystal clear soon!

Gabriella is CLEAR for listing!

The neurologist just called me after a long, stressful weekend of waiting! He admitted he forgot she had her MRI Friday and apologized for not getting me the report the same day (like originally planned). Regardless of the waiting and issues I had getting that call back from him......

GABRIELLA'S CLOT IS GONE!

PRAISE GOD! Her scan looked great! The area has 'recannulaized'. He said the blood flow has been restored to the area and the clot is gone! The damage done to the surrounding areas is irreversible but to know the cause of the issue is completely gone is TOTALLY God! And to know she is safe for bypass and transplant is invaluable news! Gabriella is most excited that her Lovenox shots are all done and she only has to chew a baby aspirin!

I barely had the call disconnected before I dialed Loma Linda. I am waiting now to hear back from them if we can go this Thursday to clinic and get her listed then or if we are too late for this week and have to go next Thursday. They will evaluate her and get her listed! EEEK!

Thank you to everyone, who from September 25th until today had their prayers on Gabriella. Those deep and heartfelt cries to God to take the clot and destroy it worked! And to know that those prayers will now be on her new heart and the surgery it entails makes me so excited to see God work again in that area!

MRI is done!

Whew, what a relief! It feels so good to have this past us!

We got up early and went to Phoenix Childrens for Gabriella's MRI. We got registered and taken back quickly to MRI waiting. The anesthesiologist came in and went over Gabriellas history with us. She told us about her approach to putting Gabriella under this time, since she was so unstable in September. By the look of shock on my face, she asked me if I even know what happened in September. She proceeded to tell me that putting Gabriella under when she had her stroke was risky, and her heart was extremely unstable during the MRI. She hit a critical point under anesthesia and she needed to prepare for that today. She decided to only put the gas on Gabriella briefly and only do what meds were absolutely necessary. So I went in with Gabriella, and she was such a big girl. She laid on the table willingly. She was scared and crying but knew this was something we had to do. They put the gas on her and it took her about a minute to calm, and they kicked me out. About 45minutes later, they called us back. We could hear Gabriella crying from the hallway. When we got in, they let me hold her. They told me that she was doing well with the gas and her heart remained stable, so they only did minimal IV meds to keep her under. The downfall to this type of anesthesia is it causes the kids to wake up quickly afterwards and VERY agitated. Gabriella cried for a good 25 minutes before we got her to calm down. She started coming around and she drank some water, and before we knew it we were being discharged!

She has been home and relaxing all afternoon now. She's eaten a PBJ sandwich, sausage, cereal and chicken nuggets. I swear, that girl can put DOWN some food nowadays!!! Positive part of the type of anesthesia they did is she isn't sick!

My work has started though. I have called the cardiologist directly, his nurse, and the Neurologists nurse. I am about to start my second round of phone calls right now before close of business. We NEED these results and the authorization for transplant SOON! Once we get that, we can head to Loma Linda for clinic and that's IT! She'll be listed!!!!!!!

If you can pray specifically for the MRI results being clear and the process being quick, because Gabriella's heart cannot wait forever.

I was reading some links from Twitter and found a GREAT write up on kids with RCM. I have read a lot of restrictive cardiomyopathy reports, but rarely do you see them for kids. Probably because it happens in less that 1 per million children. There's not a lot of information. But if you want a refreshed on Gabriella's condition, here is the link:
http://www.heart.org/downloadable/heart/1181919434962Restrictive%20Cardiomyopathy_2007.pdf

Gabriella is progressing!

Gabriella's words and sounds are exploding! She is getting (by small strides) more efficient in making the correct sounds for words without much prompting or queuing. These sounds will only get sharper and more understandable as she trains her mouth to make the movement more, in turn allowing her to put words together! This is why therapy is SO important, to keep her mouth working and making these sounds. The more she does it prompted, the faster it will become an automatic thing!

Drumroll please...

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Mama
Papa (for food)
Boo
Wow
Mommy (mommy's)
Baby
Daddy
Me (daddy's)
Mine
No
Nope
Coke
Go
Caca
Piece
Cheese
Play
'this one'
'I want'

YES! That's 20 words!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She did it! It was my goal for her to have 20 words by the new year and all of those she acquired by then! How AMAZING is she?!?!?!

I have also had multiple people point out how well her arm/hand is doing. Looking at her, you can no longer tell she has a deficit in that arm. It is only prevalent when she uses it, and even then you can see nothing slows her down! She holds it with more confidence, extends her fingers beautifully and is using it!!! She is dressing herself and putting her own seatbelt on again! Her occupational therapist mentioned reevaluating her soon to see about possibly cutting back her OT therapy! That's my girl. My little fighter!

And more good news.... Gabriella is up to 41lbs! She is making HUGE strides in her weight gain and at a weight I am SURE Loma Linda will be happy about when we resume clinic visits!! Praise God, and my deepest thanks and appreciation for everyone praying for her. Your prayers are working. She is getting to a wonderful position to be listed for her heart... what is now the final stage to getting my girl healthy and in a 'normal' life.

Neurology Follow-Up

We went on the 23rd to our follow-up Neurology appointment. When we met back in October with Kaplan, we expected to come in December and quit the Lovenox and schedule the MRI. This is not quite what happened....

We spoke a bit about her progress. Said that since she has retrieved over a dozen words so far, he sees no reason she won't get back a full vocabulary eventually. It might take years, but will happen. Her arm is probably close to its full potential, but we should continue to work with it and keep those muscles working and nerves firing to help them become a bit more automatic. He said she looks fantastic for being 3months post-stroke.

Dr Kaplan then went on to talk about the Lovenox. Said he didn't feel comfortable taking her off of it quite yet, because he was leaving for a 3 week vacation. He said he didn't feel comfortable if we took her off and she stroked again while he was gone. SO we are keeping her on it until mid-January. We have an appointment scheduled for his first day back in the office and will get her off the Lovenox then and schedule the MRI. This, again, delays her listing. It is looking like FEBRUARY is now a more realistic estimate.

He gave me the option of calling Cardiology and asking if they were comfortable to monitor him while he was gone, to go off Lovenox immediately. I called Cardiology and they agreed with him, that keeping on it while he is away is safest.

I have to admit, this waiting is getting ridiculous. The original delay was all the testing and scheduling being spread out. The second delay was her stroke, unavoidable. But this delay is just irritating me! I want her on this list and get her sparkly new heart so she can start the road to this new journey in life. And I want it to happen before something major happens to her heart.

(negative moment is passed)

So we will be in hopes and prayers that everything continues to be in God's timing!

Cardiology Appointment and development update

We saw Dr. Alhadheri for our monthly follow-up. Her heart looks stable, comparable to last month. No additional enlargement of the left atrium, and function looks about the same. He said she is still looking fantastic and lucky to be without many symptoms! The only new thing I have seen over the past month or so has been additional napping, but her body just needs the rest.

The best part of the whole visit is Gabriella GAINED weight! FINALLY! We are at 38.8lbs (she's 45" tall), and hopefully can get to 40lbs by the January visit! I can't even tell you all how proud I was! She has been on the appetite stimulant for a month now, and it seems to be doing it's job! We haven't had a meal war in a month, too, which makes me so happy!

Gabriella's words are coming, yet still slow. We are up to 11 words now! She makes a lot of the sounds, but has a hard time putting them together to make words. So when I say she has 11 words, they are 11 words she says unprompted, and in context of what they are necessary to be used for.

More
Mama
Papa (for food)
Boo
Wow
Mommy
Baby
Daddy
Me
Mine
No

A friend asked how she was doing emotionally. Gabriella and I have an amazing way of understanding each other. Of course, it is easy for me to communicate to her because she still fully understands everything. But she can 'talk' to me and by simple gestures and the look in her eye, I know exactly what she's saying or needs. I would have to guess that MAYBE once a week there is an incident or time where I cannot understand what she is saying and am forced to tell her I don't understand (with so much regret and sadness on my end). She gets upset, but it doesn't bring her down. She is struggling in therapy because she is not one to try things. She doesn't like to try because she doesn't like to fail. And when we do convince her to try something and she gets it right, she takes OFF with it! She is the hardest kiddo her speech pathologist has worked with thus far. That's my girl, giving everyone a run for their money (including me, darned copays).

So, though this is a short post, I am glad it is! Little to no news, in our situation, is GREAT news!

Neuro appointment

About time I get to this, right?

Friday we had Gabriellas neurology appointment at Phoenix Childrens. Gabriella was happy and excited when we got on campus, which surprised me! We got in to the office buildings and signed in. I was obsessively using sanitizer after we picked up a pen or sat at a chair. Lol.

We got in to see Dr Kaplan, who is a great old-timer neurologist. He was impressed with Gabriellas progress! Said she is doing far beyond his expectations just 4 weeks after her stroke. He said constantly working at words and the arm is helping her heal faster. He also said she dodged a huge and harmful bullet and that it could have been so much worse given the kind of stroke she had. Praise God for his protection!

He spoke about the numerous stroke kids he has seen over his long career and he feels Gabriella will recover very well when it comes to speech. He reminded me to expect delays and problems, but its all the same things I was prepared for. Speech impediment, difficulty speaking fluidly and finding the right words, etc. I'm ok with that. Gabriella will get back what is meant to get back and will have an amazing story of survival to tell!

We talked about therapy, and he wants me to bring her to PCH for therapy. I'm starting to feel the same after how many issues I've had getting outpatient therapy scheduled out our way. I'm thinking of considering it. I have to weigh the pros and cons for sure. But I do feel she will be better treated there so I will have to make that decision quick.

His plan for her is to keep her on a 3 month treatment of Lovenox. We go back at the end of December to see him, talk about when to stop the Lovenox (petrifying to me) and schedule a MRI. Given the MRI looks good, she can be listed for her heart in January. He did say if she were to go into hard core heart failure before then, he wouldn't hesitate listing her. But while her heart is stable we will treat the clot and stroke thoroughly.

So its all good. We are ok with the plan and know God will continue to protect her!

After the appointment, we went to the Ronald McDonald house we stayed at those 3 weeks. I was able to show Gabriella where we went to shower, eat and sleep. We took them a big box of food I gathered from family and a bunch of kids utensils and dishes I had in excess. They were more than happy to accept and it felt good to help give back. I plan on gathering food and items to take monthly, by watching sales at grocery stores and gathering from friends and family what they have in excess. So if you live in the east valley and want to contribute to them but don't have time to get up there, email me and I'll get it to them!! I want to give back when possible, because it was such an amazing haven for us and a place to meet other parents going thru a similar struggle.

Settling in

We got home last Thursday after a solid 3 weeks in the hospital. Coming 'home' was a bit different than a typical homecoming. We came home to my mom's house, where we were moving in to when this happened, where we to wait for Gabriella's new heart. Now, we live here and wait to be listed, again. She was supposed to be formally listed on October 15th for her heart, and now we patiently enjoy the time given to us without worrying every time the phone rings that it's time to go.

ETA Pictures added November 2009


Precious moment for me. This was their first encounter in 3 weeks. And she was so proud to show off her Insuflon port in her belly!

We had a coming home dinner at Gabriella's Godmothers house. It was all decked out in Minnie Mouse and Princess decor. Gabriella (and mommy) were a bit overwhelmed after being sleep deprived and stuck in the hospital, but had such a great time seeing all of the cousins and family together. I think the best part was how her cousins (the little posse) just embraced and accepted her speech issues like it was nothing. No sympathy, no coddling, no issues whatsoever. It was wonderful, and such a refreshing thing to be reminded to embrace the differences in people and challenges of life.

ETA Pictures added November 2009






Friday we started up at 8am with therapy evaluations. We had someone eval Gabriella for occupational and speech therapy. They are going to try and fit as much therapy into their schedule as possible. Since we get 60 days of therapy per calendar year, we are going to aim for a busy week of speech, and after the 1st of the year cut it back a bit to spread out the length of therapy we get. Also, by then, we should have Gabriella's IEP completed and an in-home tutor from the school system coming to work with her. Seems it is all falling into place!!! I got a call to schedule OT today but I want to wait for speech and do them together. Hopefully we will be on track with a new schedule by weeks end! Until then, we are doing lots of work at home.

Besides unpacking and moving our items into place, we had a relatively normal weekend. Grocery shopping, cooking meals (yay!) and a family birthday! My niece turned 19, and the poor girl got a bunch of kitchen stuff for her new place from me. Stinks being an adult.... sorry babygirl!

Sunday morning I took out her Lovenox port since the case worker never confirmed a home-health nurse to come over and help install a new one. I gave her a bath since she was free of it and let her go the whole day without being attached to something. We got home from my nieces birthday and put on a lidocane patch and set the timer for 45 minutes to let it sit before placing the new port. Sure enough, 27 minutes before I am due to insert the port, I get a call from an in-home nurse wanting to schedule to come out Monday and help me place the new port. Lovely. We talked a bit about it, and I had to do it on my own to get her the nighttime dose. I placed the new port by myself! So since it was already approved and covered by our insurance, she is going to come out the next 2 weeks of placing it to provide supervision and support. I need the reassurance I am doing it right, and also need some tips on easing Gabriella's fear. Her biggest fear is needles, and even though she will agree that it didn't hurt a bit because it was numb, it is still an emotionally trying experience for her. BUT it is better than 14 shots a week, and she knows that. That's the ONLY way we get her to calm enough for me to place it is to remind her she doesn't get all those shots.

Gabriella is- about 85% of the time- doing super well. She has much of her same-old Gabriella personality. I do find her from time to time a bit sad. Last Friday was the worst. I think being back at the same things, same toys, same activities, etc, makes her realize that she truly does have a handicap. It was easy to not realize it as much in the hospital when everything there was controlled and new. She learned the new things with her new setbacks in tow. But now she is facing familiar things with her new setback, and it upsets her. She gets sad, and you can see the true sadness, on occasion, in her face. Poor sweet baby girl, 4 years old, should not need to understand that level of sadness.

This Friday we go to see the Neurologist. He should be able to tell us approximately how long he wants her on the Lovenox injections, when he wants to do another MRI, and when he might clear her for bypass. Once he clears her for bypass, she can be listed for her new heart!!! Approving her for bypass is basically allowing her to have the surgery. As they remove her old heart and put the new one in, the time in between will consist of her body being supported by a bypass machine. Now that she had the stroke, she is not safe for this, but will be when we can get this clot broken up and her body stable again. He may say 6 weeks post-stoke and she can be cleared, all the way up to 6 months for her to get the full, aggressive treatment of Lovenox. I just need to pray God guides him to the best decision for Gabriella. Time is of the essence now, as her heart caused this stroke and could do it again, and as her heart could decline to that critical point at anytime.

All this talk of people getting H1N1 and Influenza A has me truly dedicated to keeping my kiddos inside. I need to keep Gabriella as healthy as humanly possible, which means massive amounts of sanitizer and limited trips out of the house. Her immunity is, by nature of her heart condition, a bit lower than normal... and then there is the risk of her getting sick and it harming her stable condition. If you happen to see me out and about, I'll be the mom who has the large bottle of sanitizer in the side pocket of her diaper bag like a walking sanitizer dispenser. Or the woman who goes through the drive-thru bank or drive-up pharmacy and cleans my hands after touching the transaction tube. Yeah, I'm one of those now..... lol. But you know some of you are too.... ;)

Hoping to post some pics this week! Be on the lookout!!!!

Last week at the hospital, in pictures

More Therapy Dog!



Momma time with PJ at the Ronald McDonald House




Physical Therpay with Nushka






Going home!


Crashed out exhausted on the ride home

Going.... HOME!

It's been a whole week since my last update. Out schedule is so packed! Starting at 7am, we are swamped with therapies and activities and things to keep us busy and unaware of the stuffy hospital setting. We get a short break everyday at 3p that consists of about an hour of convincing Gabriella she needs a nap, then an hour and a half of napping, then a half hour of convincing her she needs to get up. Then its dinner, family visiting time and bedtime!

First thing first, Gabriella's heart is stable! Praise God! They did an echo Monday per my request to make sure the trauma of the stroke and medications she was on did not negatively affect her heart. The scan showed she was back to her baseline pre-stroke and there were no immediate worries aside from the ones we faced before September 25. I am so severely grateful for this...

Over the past week, Gabriella has 'graduated' physical therapy. Not literally, but she technically doesn't need the class anymore! Her balance is back on track, her stamina is in full 4 year old force and she runs around with the therapists like crazy! occupational therapy is going to well. Gabriella is using her right arm consistently. We are working on gaining her fine motor skills (using her thumb and pointer finger for things), controlling the movement, and building wrist strength. She still has hardly any wrist movement or control, but we will keep working on it! Speech is going well. Though Gabriella still isn't talking, she is making so many more sounds and has strengthened her mouth and has gained the ability to control some tongue and jaw movements.

The level of her speech disability is extreme, so we are reaching out to multiple resources for therapies. Thought we were denied for ACCCHS before we even applied, it's ok. We start outpatient therapy Friday, we are working on setting up with the Chandler school district to form an IEP and get in-home tutoring, and have applied to DDD (not looking favorable because she doesn't quite qualify) and Arizona Long Term Care for supplemental therapy assistance. I found out today we have a $25 out of pocket for each therapy, so I had to voluntarily decline physical therapy due to the cost. So just doing OT and speech 3 times a week as recommended, it could cost us $150 a week for therapies if we do them 3 times a week. I am hoping we can get the school thing rolling within the next month or 2 and can bump the therapies to twice a week and use school as the additional. Though the $25 really stinks, we DO get an additional 60 days starting January 1! SO we can exhaust all 60 days before December 31, and get another 60 days starting January 1.... which gives us until well into the 2nd quarter of 2010 before we have to worry about insurance not covering therapy.

The title of this blog says we are going home! YAY! We are being discharged Thursday, which makes it a solid 3 weeks in here. I was telling my sister, it wouldn't be so hard to stay here still if it weren't for the fact that Gabriella is doing so well. She is running around, playing and being herself- which makes me want to get her home to badly. Had she been in bed a lot, on lots of medications or not doing as well, I wouldn't hesitate staying, but she is READY! Her brother is going to be her best DAY LONG therapist. We have tons of activities to do at home. And thanks to the approaching cootie season, we will be forced to mandatory play time! If you don't see us around a lot, or we don't show up to functions.... don't be sad. It's for the best of Gabriella. Once the neurologist clears her to safely be put on a bypass machine, she will be listed again on the transplant list, so I need to start NOW in keeping her as healthy as possible! We are not sure how long it will be before she is listed, but it could be as soon as mid-November or as long as late March. Hopefully, after meeting with our new neurologist next week, we will have a better idea.

I am getting bombarded with pamphlets, scripts and therapies so I should go for now. I am way too excited to drive my van, cook a meal, sleep in a bed, and squeeze both of my babies in my arms at ONE TIME! Thank you all so much for making it happen through prayer! They said rehab would be 2-3 weeks minimum.... and here we are- 2 weeks into rehab and she blew the socks off of everyone! Way to go, my little princess. You are my hero.