Wednesday, September 30, 2009

Oh my.

Well, this is going to be hard. Gabriella is completely shutting down. She is angry, and getting hostile with people. She is sad, and has that trapped look in her eyes. She is frustrated and her body shows it. She chooses to pretend she's sleeping to get out of seeing doctors or therapists. She is allowing herself to sleep constantly when I know she wants to be awake and do things. She holds her smiles back when she wants to smile. She refuses to do some of her most favorite things.

Our battle right now is not to get her words back, or the function in her arm. It's to reinstate that strong will she has to achieve things. I firmly believe if she can find that desire to get better, therapy will be a million times more effective.

We explained to her it is ok to be angry and sad and scared. But it is also ok to be happy and play, too. Goodness, if I couldn't talk to anyone and communicate, I'd do exactly what she's doing. But I also hope someone would be with me to keep me going in the right direction, which is why I will never give up on her or leave her side.

We talked about tomorrow and she agreed to work hard for her teachers and get out of bed. We told her we weren't here forever and they just want to help her. Pleeeease pray. Though we stay strong for her, it is harder than anything else on us to see her shutting everyone out.

We are moved to Rehab. It is very difficult for us. I can tell it is going to be the hardest few weeks here. Rooms are tiny and shared with two people and the bathroom is shared with 4 patients. We pray we get a roommate that's quiet and loving as our last one went home. It smells like hospital, gross and stale. The kids here are difficult to see because they are all suffering. We feel crammed and trapped. Its going to be hard. I've already broken down a couple of times. But its necessary and something we will do for Gabriella to get her back on track. She's scared in this room so we will do everything possible to get her out and about.

Therapy starts tomorrow. I'm excited for the routine, and that we are required to leave the room. Gabriella needs to be forced to leave her bed.

Please, God, let the healing be fast and thorough. We want to take our baby home.

A beautiful day!

Gabriella tolerated being weaned off the Dopamine and she has been off the drip for over 12 hours now!! Last night they removed her Arterial Line in her arm, and so the only tubes she has is the O2 Sat/ ET finger and, her IV line in her hand and her central line in her groin!

She slept good last night. NO throwing up, so I was grateful the 2oz of Apple juice and few bites of apple sauce kept down! Shes having '#2' issues, but her little system was so empty I'm hoping the new foods will help with that.

Because she is off the Dopamine, we have more freedom with PT and OT, and we can take her around the hospitals in her 'princess chariot' (wheelchair). Given they can get her a room, we will be moving to the inpatient rehab wing today!!!!!!! I am SO excited! Like the nurse said this morning, we are leaving the sick wing to go to the get better wing. I feel we have maxed out in the PICU, and they have done absolutely AMAZING. She is ready for the next step, and I think starting a new goal will only be best for Gabriella. She is so driven and strong-willed that I think it will perk her up to maybe see some other kids and be in a different environment.

We have had the most amazing nurses ever created in the world of pediatric intensive care, and I will argue if anyone tells me otherwise. ;) I will never in my whole life forget our day nurses Becky and Jodi, and our energetic night nurse Bree. Their passion, sensitivity and genuine love for my Gabriella has been more comforting than any other medical treatment can offer. You could tell Gabriella trusted them, and we cannot WAIT to bring her back in here showing off her smiles and moves and hopefully words!!! Not only were our assigned nurses fantastic, but all of the nurses who answered call lights or beeping machines

The day is to beautiful to explain the heart transplant journey, as I had planned on doing. So I will post that another time. Just know it is something we have faith God will provide the means and stability for, and it is not out of the future plans as of yet.

Keep the prayers coming. Don't give up on them. God has his hand on Gabriella, and she is proving to everyone in her life what a true fighter and survivor is. She is giving us a strength incomparable to anything I could imagine. She's teaching us to be better people.

Tuesday, September 29, 2009

A little more for Tuesday

A friend pointed out a few things I might not have mentioned but are important! Its so hard to hit every factor because there's sooo much going on! So if I've mentioned them I'm sorry, and if I haven't then here you go! I'm going to mobile update so can't look back to see what I put. Call me lazy, or sleep deprived.

Gabriella threw up monday night and her NG tube came with it, so they removed it. They also removed her oxygen today so she is tube free! Thank goodness!!

They started lovinox (sp?) in lieu of the Asprin last night. It is a bit stronger than the Aspirin and will be a twice a day injection for the next 6 months. They have a port in her belly to give the injection and the port lasts 7 days, so that's 14 less injections than she needs. She seems to be doing well, and this will not only help with the existing clot, but prevent further ones from forming.

And tonight after I updated, they completely turned off her Dopamine! Given she can maintain her bp tonight we might be at rehab by tomorrow!!! Praise God!

Tuesday update

Today has been low key, but monumental yet again! She has slept most of the day, only to wake for a few things. Her body is resting and hopefully healing. It was scary for the first few hours because she was almost unarousable, and she has been the same all day, but when she is awake she acts appropriately so there is no concern of a complication. Just rest and healing.

I left for an hour or so today to do some laundry and shower at our new room at the RMH. Amazingly enough, we got the Mickey Mouse room that looks like a room at the Disneyland Hotel! It is AMAZING. Though it was hard going in and knowing Gabriella couldn't see it, I plan on taking tons of pictures for her. PLEASE call your local RMH and see how you can help. Stocking cabinets, donating unused but good condition household items, etc. They are a blessing to families like ours and I don't know what we'd do without them!!!

They lowered her Dopamine to 3 from 5... that much closer to being off of it! Once she is off of it, we move to rehab and start the building process!!!!

She woke for Elmo who came to visit her in honor of Sesame Street's birthday! She was semi-amused with the silly looking Elmo. She also (kinda) woke for a bath and to wash her hair. She slept through most of it, but it had to feel go to be clean. I got to sit in a chair and hold my baby.

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The therapy dog came to visit as well, and Gabriella perked up.
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We had Physical Therapy, also. And it was fantastic! She has no concerns with her walking. She will be great once we work some of those muscles. Her arm has some base muscle reactions, which we are going to immediately start strengthening. She has some purposeful movement and muscle flexing, so I am beyond thankful for that!!! she did a puzzle and practiced some movements. She got tired awfully quickly, but it was a profitable 10 minutes of rehab!!!

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And the best part is we got her a chair!!! Once she is off her Dopamine, we can take her for rides. It also gives her somewhere safe to sit while not in her bed- and to me thats huge. I hate that shes laying in a bed all day.

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And a funny part of the day.... she was asleep and looked up at me suddenly. She kept pointing to her table. I quizzed her as to what she wanted and discovered she wanted to paint. I guess when the artistic bug hits you, you must act! She painted for a few minutes and went back to sleep.

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Monday, September 28, 2009

Monday evening update

I am sitting in a dark and quiet room at 920pm, and Gabriella has been in a super deep sleep for about 3 hours. She has always been a heavy breather and is doing it right now as she gets some much needed deep rest.

Physical therapy was interesting, for sure. She was awfully angry at the therapists, because she was still so tired from the morning and didn't want to exert her energy. They eventually got her to sit on the edge of her bed for a moment. She was frustrated and mad. They got her onto the bedside potty and she tried to go. When they got her up, they had her stand. Gabriella, being her strong-willed and sassy self, walked herself with minimal assistance to the bedside. She wanted back into bed so much she got herself there! Praise God for leg strength!

The therapist said first things first, she wanted the arm board off her right arm. I was totally in agreement.... if her movement is going to come back at all, it won't happen strapped to a board. The nurse got it off this evening, and it is great to see her little "lazy arm" free.

The in-patient rehab doctor came by to qualify Gabriella for therapy once we are out of PICU. Gabriella must have had a crush on him, because she was smiling and showing off her little talents. HE made her happy, and she responded well to him. I hope he comes in daily!

The swallow test was easy peasy. When we went into the room she smiled and nodded her head. I knew immediately that it mean "I've been in a (x-ray) room like this before! I know this isn't bad". She sat in this chair, as I fed her multiple consistencies of fluids. The real-time X-ray took a picture of where the fluids were going once swallowed. Thinner liquid was going to her windpipe area before making it to her esophagus, but thickened fluid went the right way. They are going to start her on a pureed diet soon, and slowly work on soft foods. Once the muscles regain some strength, we will work on thinner fluids. And hopefully stronger mouth muscles mean some return of some speech or expression. I so desperately want to hear her voice. And I want to hear EVERYTHING she has to say about what has happened the past few days.

We are mastering the art of communication. It is much like a newborn baby, in that I need to read her signs and habits to know what she needs. We are using simple signs for nausea, potty and more. I am also able to understand what she needs or wants based on how she was pre-stroke. It is simple to figure out what she is thinking, and we try to enforce that we acknowledge when she is mad or upset or frustrated, so she doesn't feel she is alone in her feelings since she can't express them. Tonight we caught her staring at a picture of all her little cousins. We asked her if she missed them, and she nodded yes. It was a hard realization for her this evening, but she will be back with them in no time. And I know for a fact they will love on her and be patient with her new way of play.

So as I said, she is sleeping deep. We just took her potty and she is back in bed, not missing a beat of sleep. We got checked into the on-campus RMH so we will be utilizing that. Paul will sleep there, and on occasional nights someone will come and bring PJ to sleep there also. I will shower there and maybe nap on a slow day..... but most likely not. Who am I kidding? I hate leaving her side to use the bathroom or grab some water.

Although I have nothing to complain about compared to the complaints Gabriella must have, this PICU room is freezing. During the day it is around 69 but I swear at night it is 60. We are going to watch the temp gauge tonight to see what it drops to. We have mastered the art of wrapping ourselves in blankets like burritos just to keep warm! Just had to whine a bit... but its cold. So someone smack me for always complaining about how hot Arizona is. Hahaha

Praying for a not-so-busy but just-as-productive day tomorrow!!!!!

Monday midday

I cannot let this day go any further without updating, because I left a lot of people in the dark all day! Paul ran to the RMH to wash off the hospital stink and try to get us into the House on campus of the hospital rather than the one a couple miles away.

Gabriella lost 250cc's of feeds early this morning so they stopped her food for a while. She woke up to doctors and rounds at about 630a, but was not ready for the day yet. Regardless, we had to start.

Being Monday, a lot of things were scheduled and we got rolling quickly. Speech therapy came in to do swallow and food evaluations. She got to eat some applesauce, drink some apple juice and eat a cracker. She didn't do as well with the cracker, because moving it around with her tongue was difficult. The applesauce was perfect consistency for her. The juice went well, and she even drank through a straw, but had a few difficult times swallowing. They are going to do a Barium Swallow test today at 3pm to make sure she is able to swallow in full. I'm hoping we can get this Ng tube out soon and her her on some foods by mouth. I firmly feel that will help strengthen her mouth when she is forced to use it. A great sign was afterwards, she had cracker stuck in her teeth and when I went to brush it out, she opened SUPER wide! It was controlled too, because she did it twice for me. Praise God for little mountains and changes.

We went down right after for a CT scan. The Hematologist just came in to tell me that there was no signs of bleeding at the stroke site and only the slightest of swelling. I asked her the risks of it developing at this point, and she said it normally develops in the first 72 hours, which we are at now! PRAISE God for no additional complications.

When we got back, she was exhausted. She threw up again, and we got her changed and snuggled into bed. Shes been asleep since then, and is recharging her little body. Physical Therapy is coming by at 130p, so with a combination of that and the swallow test, she should be a pretty tired girl this evening.

Please note if you come to visit that the RSV rules are in effect and children under 12 are not allowed, along with anyone with any cooties. If she is sleeping, we do let her rest, but this beautiful hospital has some excellent waiting areas.

Sunday, September 27, 2009

A couple pictures from today...

PJ wanted some chicken nuggets
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A smile for the hand puppet cow
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The biggest smile yet, and caught on camera by Teresa.... thank you Teresa! Notice, it is smiles on the right side????? :)
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Want to see her impact in a few numbers?

These are people going right to my blog... not including all of those who already follow her in a blog reader.....

Blog hits Friday 9/25:
2088 visits, 1691 first time visitors and 3241 pages viewed

Blog hits Saturday 9/26:
2174 visits, 1479 first time visitors and 3333 pages viewed

Blog hits Sunday 9/27:
1534 visits, 950 first time visitors and 2172 pages viewed

Her Facebook group has 131 new members.

The lives she has touched or been a part of their prayers: countless.

Sunday update

Started at 210pm: Saturday night was peaceful for the most part. They increased her NG feedings twice. When they got to 15cc's, she threw up about an hour in so we reduced it. We (my requests and the intensivists agreeing) decided today to keep Zofran going around the clock as we push her feedings.

Her throat is very irritated due to the NG tube and intibation. They gave her some Tylenol to help with that. She is spitting her saliva instead of swallowing it because it hurts so bad, so I'm hoping she can get over that pain, poor princess.

Gabriella is getting depressed, so please pray for her spirits. She is a fighter, no doubt.... but she is already tired of the lack of communication and being in bed. She asks to get up to the bedside potty every time she wakes, and we take her. It is nice to get her muscles moving- or at least it makes me feel better.

There really isn't a hardcore or long term plan for this week. It is more a series of short term possibilities and baby steps. Tomorrow she will have a CT Scan done to look for bleeding. If all is clear, she will start a new and stronger anticoagulant Tuesday. This new one is injection, which Gabriella will HATE, and will last 3-6 months. They mentioned 'installing' a port into her leg that we can inject it through but I have yet to find out more about it tomorrow. Hopefully speech therapy will start tomorrow and we can get this swallow function evaluated. I would love to get her mouth moving and functioning with them.

Whether this clot breaks down or not, her function and speech will take work to regain. That area was damaged and it cannot just reverse. But with the reassignment of speech and movement I spoke about yesterday we can help her regain the lost abilities through therapy.

I left for a couple hours today to shower at the Ronald McDonald house, do some laundry and see PJ. My sister met me up there with him. He was so precious, rubbing my leg and arm and laying his head on me. He was full of energy, but as much as it was fantastic and fuel for my heart to be with my boy, it was equally as hard to think of what was and what now is. To see him running and playing and talking, knowing Gabriella can do none of that, was extremely difficult. But I was able to love on him and make him lunch and spend some short but quality time with him.

1030pm: We had lots of visitors so I am picking up this update where I left off. After I got back from the RMH and sent Paul to play with PJ, Gabriella started to get a slow flow of visitors. She was adorned with gifts and girly treasures. Each thing she got - she studied. She ran her fingers along the front of a book or down a Barbies hair. A friend played hand puppets with her, which made Gabriella smile. We blew bubbles and watched her kick her legs up to get them and bat at them with her hand. She opened her own goodie bag of items and she even raised her eyebrows in excitement when she discovered her Barbie can go in the bathtub with her. When Daddy got back from time with PJ, Gabriella easily showed him the goodies she got, pointing out the details she discovered when she got them. It was hard to be depressed with so many people visiting you and so many heartfelt gifts to surround her in bed.

Some little things she did today that were big in my book... she made a couple noises in place of her blank words which was very encouraging to me. She even made a sound much like 'uhn-uh' to say no to the nurse changing her feed. She had what looked to me like unconscious movements of her elbow when she was mad at the nurse or moving up in bed. She's engaging... and not giving up hope. I ask her to try and practice her words, and though her mouth never moves, I encourage her for the effort and tell her we can try again later.

We played hard today, and engaged for quite a while. It exhausted her, to the point of a headache, but I cannot regret it. It was awesome to see some of her excitement and feisty-ness. They will give her Tylenol every 4 hours all night to help curb that headache, and I am praying a combination of her much more peaceful rest and hard work will give her a calm night's sleep. Tomorrow will be a bigger day, having her CT scan and speech therapy. Of course, more love will come visit her throughout the day, and she sure loves it.

Gabriella is up to 20cc per hour of NG feeding, and tolerating them well. The Zofran seems to be working, but I had no doubts. I know firsthand how amazing that med is! They are slowly lowering her Dopamine and plan to restart her Atenelol soon. It is all a prioritized balance of brain and heart with her, and it seems the plan they have worked out for her meds is reasonable and cautious.

I am sorry it took so long to write today. I was gone with PJ most of her napping times, and the evening was filled with the amazing surprise of playtime. Though it is one of my top priorities to keep everyone updated in detail through my blog for both your concern and prayers, I much prefer blowing bubbles to typing. :) But I am sure you understand!

I can't thank all of you enough, for the messages, texts, emails, prayers, love and support. I tend to cope so much better when people are here. It almost is as if her condition doesn't negatively bother me as much when people are around, because the energy of love filters out the nightmare and I can only see positive. Nights and mornings seems to be hard emotionally on me, but as long as I am right by her I am ok. And seeing her look for me every time she looses track of me makes me feel loved and wanted and tells me I am doing something right in her eyes.

Update coming

I know so many people are checking for an update. It has been a hectic day. Gabriella is okay, and I will settle down to update shortly.

Thank you everyone for loving my baby!

Saturday, September 26, 2009

A picture of my sweet girl

I am attempting my first mobile picture upload on this blog. I hope it works. It was a highlight of our day.

Though she is immobile on the right, her left side is also weak and slow, but when she had some strength she showed it. She reached for her Rosetta barbie doll and held her. We pointed at her dress, hair, wings and tights.

We painted her toe nails tonight too, which she enjoyed though she couldn't express it.

She started 5cc every hour of NG tube feedings (nasal tube) and we will slowly increase that. Otherwise, she is sleeping soundly and tonight has been calm.

I want to thank everyone from the bottom of our hearts for the prayers and love. We have had amazing people surround us long distance and up close. We are beyond blessed and she will be given fuel to fight by seeing those that she loves around her.

Saturday 5pm update

I wish I had better news for today, but not much has happened. Gabriella got morphine for pain at 830am and we have lost the entire day to morphine side effects, which I regret. She is angry and uncomfortable, understandably. She still has no speech and no right arm movement.

We assisted her to the bedside commode once today. I was able to give her a sponge bath and the nurse change her bed sheets. Her right leg strength is a bit better, so I'm praying that's a beginning.

There are so many conflicts as to when to do what tests or start what therapies. Tonight, with her aspirin in her NG tube, she will start feedings in small amounts. I'm hoping it gives her energy and stamina. They are contemplating when to do another MRI and see any changes in the clot. Ill post when they decide.

One miraculous thing I want to mention is speech. The location of her clot is directly on her speech area of the brain. Until puberty, children have the ability to relocate and reassign where the brains speech ability is located. Fortunately, she has the possibility of her speech returning because of how the brain performs this amazing change.

I cannot even begin to express how badly I want to hear her voice again.

Saturday 5am update

Gabriella has slept most of the night.

I laid down by her and we fell asleep a little past 11p. She woke up for a bit at 1a and started choking on her saliva and threw up. She fell back asleep but went through the same again at about 330a. The second time I was by her again and had the suction handy. She started to get extremely lethargic and was not nodding her head when we asked her things.

Since her swallow is weak, and we are still unsure if she is swallowing all of her saliva, they decided to put in an NG tube to drain her belly as it accumulates bile, and give her zofran to relieve the nausea. This will prevent her from puking it up and possibly aspirating it. She perked up a bit after the zofran kicked in. She doesn't want me to sleep by her now so I am curled up at the foot of her bed.

I am anxious to see what Saturday holds for my princess. Our prayers have been constant all night, as have so many of yours. We are extremely grateful.

Friday, September 25, 2009

Recap of today

I am sitting at the end of my princess's hospital bed and wanted to cry out for prayer. Tonight feels like such a critical time. We are watching her vitals closely, hoping things stay stable. I can't help but feel God will take that clot in her brain and gently diffuse it, and give new life to the damaged areas that have been without blood flow.

This morning at 930a I gave Gabriella breakfast. Shortly after, she was on the ground, not able to speak and unable to get up. I immediately called 911 and the cops and paramedics arrived quickly. PJ was scared for his sissy, and the paramedics started working on her. I informed them of her heart history and requested they bring her to Phoenix Childrens. They got her out of the house quickly and to the Air Evac, while I waited for my mother in law to come get PJ. When she arrived, I sent PJ with my father in law and we drove to the hospital. I managed to alert Loma Linda while rushing to Phoenix.

They did some vitals and an emergency MRI, which took longer than the 40 minutes they estimated. When we got to her PICU room, a huge team of doctors and nurses were at her room, trying to figure out the best possible treatment. The doctor told us to sit so we could talk, which is sign #1 its bad news. We were told she had a stroke and the damaged area was pretty large. This was more than likely originating from the stagnant and poor bloodflow in her heart, and the blood thickened and shot to her brain. At first, they planned to send her out to Barrows Neuro Institute but got word they couldn't perform the TPA infusion they had hoped because of the severity of the thrombosis (clot). They put in an arterial line into her hand for blood draws and to better monitor her blood pressure. They also put in a groin catheter. They will treat her with aspirin daily to thin the blood.

As the day went on, she had tiny improvements. It started off with very minimal response- tiny nods and weakness all over. No movement on her right side, no talking, and weakened left side movement. By tonight, she had given us the most gorgeous half smile grins, nodded yes and no for our million questions and is showing some left side strength. She still isn't speaking at all and her right arm movement doesn't exist. But as the aspirin works, and the clot dissolves, we have a better chance of regaining these lost abilities. We will start speech therapy monday, given the weekend goes well.

If the aspirin therapy doesn't work, we will face other treatments. They are watching for swelling around the damaged area and keeping a close look at her heart. The last treatment we want to consider right now is surgery, so we will cling to the prayer of healing.

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.

Updating bedside as my beautiful baby rests. After consulting with a couple hospitals, they decided on Asprin treatment to help slowly break up the clot. Will be a long weekend of waiting and watching for improvement in ICU. She is giving half mouthed grins and nodding her head. Starting to be irritable with her lack of arm movement and not being able to talk. If you have the priveledge of knowing Gabriella, talking is major.

We have assured her that her arm is just lazy and will move again soon. And that she is like Ariel, who lost her voice but got it back.

Please keep the prayers coming. That clot has no chance in the face of God's powerful mercy!

Gabriella had a stroke

Everyone, please pray this specific request- that God break the clot apart in the left part of her brain and restore full function. Quickly and safely.

She currently has no right side control and no speech. They are working out the best treatment possible for recovery. This puts her transplant on hold.

I beg of you to call, text and email everyone you know. Pray.

I need everyone to pray. We are at the hospital. Gabriella was taken by helicopter to Phoenix Childrens at 10am. Possible stroke. She is in MRI now.

I am begging you all to pray.

Friday, September 18, 2009

A great read for a Friday...

I urge you to read todays entry from a man given a new chance at life. (link below) He received his heart this past week, and today's entry made that light at the end of the 'transplant tunnel' SOOOO bright for me. Though I am not the actual recipient of a new heart, watching my daughter being chosen for this journey and being responsible for her little life lends me a point of view that is the next closest to being the recipient.

God Bless Paul Cardall and his new heart.

Wednesday, September 16, 2009

Amazing little children...

What a fantastic day.

Remember Kate McRae? The little precious 5 year old girl from our neck of the woods who was suddenly diagnosed with a brain tumor? Check up on her CaringBridge website Journal and see the amazing news - September 16 at 7pm. Praise God....... the tumor is shrinking!!!!!!!!

I have to share the prayer my sweet Gabriella said tonight. She prayed for Kate, all on her own. Some of her innocent and honest requests were to "make Kate healthy and strong, let her get no more shots, let her feel better, I love her and God loves Kate".

Luke 18: 16 NLV Then Jesus called for the children and said to the disciples, “Let
the children come to me. Don’t stop them! For the Kingdom of God belongs to
those who are like these children.


Also, Owen, a local fellow heart buddy of ours, had a very successful procedure done today! Read about it on their family blog and take a moment to pray for Owen!

Little warriors.

Tuesday, September 15, 2009

The way Jesus wants us to be...

We are in the process of thinning our life of tangible posessions. We are selling most of our furniture and excess items. We are keeping the kids beds and toys, our mattress and some kitchen items, along with emotionally linked items like pictures and a few collectibles. We have been using CraigsList as a main source for getting rid of most of the larger items.

Last night, we sold our dishwasher. When I laid down in bed afterwards and thought about the events that took place, I kept thinking about how what happened in our driveway was how God wants to see His children interact and contribute to eachother. This isn't a new thought. I have been involved in so many scenarios in these past 4 months that I look at and can see God smiling at his children.

A man, wife and adorable little girl knocked on our door in response to our ad. We showed them the dishwasher and went over the details of it all. Of course, we got to talking about Gabriella and her heart, and the journey we are facing. We talked a little about faith, the church they attend and the kids. The wife told me that Wednesday she was available and would help me price items for my garage sale this weekend. A perfect 'stranger' offering her valuable time to help another person overwhelmed with life. I was completely shocked and grateful, as this has been happening so often to us. (Thank you to everyone, if I haven't thanked you!) How many people that you have known for 5 minutes offer to help with one of the worst tasks ever? She has a sweet soul, and is not afraid to show it.

The part that made my heart fill and recharged my energy to keep going with this moving and purging process was when the husband asked if he could pray for us. In my driveway, after 9pm, in the headlights of my car and with a garage of our life for sale behind us, he prayed over our family. It made me think of how brave it is for some people to ask if you can pray for them, yet he so easily asked and said the most perfect prayer. I am grateful for his obedience to God and his compassion for our family. Between people we know and strangers alike, we have yet to feel alone. God is good.

Two morals from last night. First, God strategically places people in perfect places to give us support when we are feeling weak- which is the same way he will provide a heart for my Gabriella. Second, not everyone from CraigsList is creepy.

Thank you J and K. You have become a very important member of a large group of people who has bleddes this part of our lives.

Pampered Chef Fundraiser

THIS SATURDAY! Proceeds from the sales will go back to benefit Gabriella's Heart account and assist in medical treatment and transplant related expenses!

There are 2 ways to order! Go to www.pamperedchef.com to review the catalog. Once you know what you'd like, either:

  • email the order to mom2brody@cox.net with the item and item # OR
  • come to the open house on Saturday, September 19 9am to 1pm and place your order then!

Out of state orders accepted! Please email mom2brody@cox.net or Gria2515@aol.com for any additional questions or address and directions to the open house!

Thank you!

Monday, September 14, 2009

A little facelift....

My blog has been the same bright colors for over a year. I thought it would be nice to give it a little warmer touch. As much as I don't like it the white text boxes, I wanted to to still be easy to read. What do you think of it overall???

Saturday, September 12, 2009

Thursday, September 10, 2009

Fundraiser Rummage and Bake Sale

Flyer link: http://farm3.static.flickr.com/2483/3906072560_2ae3e6d940_o.jpg

RummageSale

This is an open sale! You can empty out your garage and donate your items to be sold. Or come our to find a treasure of your own. Contact phone number for additional information is on the flyer (Frankie).

Wednesday, September 9, 2009

A little flickr of sunshine today

Today we had our monthly cardiology appointment with our Phoenix doctor. Typical echo, consult appointment.

The first awesome bit of news is Gabriella has gained almost a whole pound! She was 37.1lbs on August 26 at her Loma Lina clinic appointment when they told me she needed to gain some weight. They gave me a goal of 1½ pounds before our next visit to Loma Linda. Sure enough, we are almost there! We have a couple more weeks before we head back, so I'm hoping to surprise them with some more weight gain!!!!

Today's echo seemed to FLY by, and we were done before we knew it! We met with Dr. Alhadheri afterwards to go over the results. Stable. PRAISE GOD! Her last echo was 6 weeks ago, and every echo she's had has been "increased pressures and a bit more enlargement". Not this time! Everything is status qua, the same as 6 weeks ago. Heart function is strong, though it is still working way harder than it needs to. Oxygen levels are spot on. Everything looks great!

Everyone there was in agreeance that we should still fly with the Wish Trip. Seeing as how she STILL isn't listed yet, and it could be a few more weeks based on missing information and arrangements, and her health is in such great shape right now. She's stable, active and healthy (for the most part). After transplant she will be on medications, at risk with all those germie people and prone to one of MANY possible complications which could require oxygen or feeding assistance. And I truly feel today's stable report was God's way of giving us peace about going and having one last crazy fling all focused on Gabriella! After this trip and once she's on the list, I won't be leaving her side, we won't be leaving the east valley, and we will be conserving energy and health by staying 'home bound' all fall/winter, or until she gets her call.

On to the arrangements we are lacking, I am having a heckuva time finding a flight company or private pilot able to assist us in one way air transport. Being an 'on-call' situation is creating some difficulty. I have quite a few possible resources in the palm of my hands right now, and I'm praying a couple of them turn out to be useful. BUT if anyone knows someone that owns a plane, is located in Arizona, and wants to help with an on-call urgent flight situation, please have them contact me or give me their information. We need to be at Loma Linda in 3 hours from the time of the heart offer, and it will be either 2 or 3 passengers (depending on the pilots requirements). I am willing to reimburse for fuel and time, but these companies wanting to charge $60k aren't working for me.

God Bless everyone. I am going to float on this cloud of 'stability' for the evening and thank everyone for their prayers. I will never loose hope for a miracle.

Tuesday, September 8, 2009

Happy Birthday PJ!!!!


Two years ago today, on 09-08-07, God blessed me with my 'Little Man', my 'Bubba', my 'Sonny'..... PJ. Goodness, does time fly!


He is such a loving, affectionate cuddlebug. Definetly a Momma's boy! He has such a sweet personality! He loves impersinating sounds or people and knows exactly when to give his cheesy smile to make you smile. He attempts to sing his ABC's and gets many of the letter combinations correct! He counts in a similar way.... 3,4,7,8,9,10. He loves GusGus from Cinderella, Dumbo, Woody, Donald Duck and Peter Pan. He loves to pray to Jesus, but not as much as Jesus loves to hear his sweet words. His favorite foods this week are bologna and macaroni and cheese.


PJ has a special light inside of him. As he grows older, it becomes brighter. He will make people happy in his lifetime, I just know it.


"I love you too more", Sonny!


Monday, September 7, 2009

Family Portraits

I mentioned in passing that we had family portraits done a few weeks ago. I got an email today from Meggan, the photographer who so generously and lovingly donated a session to us, that my slide show was up for preview!

I cannot even begin to find a word big enough to thank her for these pictures. Some of them have so much meaning to me because of a particular gesture or look. And others are just precious. They are fantastic! Even with PJ's squinty eye from having pink eye!

SO take a look by clicking HERE, select the Previews option and the password is 'kristiv'

PLEASE respect the art and professionalism of photography and DO NOT screen capture or copy pictures from her website. Shoot me an email if you would like any of the pictures, and I will get them to you. I will have access to all the pictures in high-res within a week or so.

Friday, September 4, 2009

Go get some ice cream!

http://www.wish.org/supporters/current_sponsors/promotions_that_give_back/seasonal/cold_stone_creamery

For the whole month of September, stop into Cold Stone Creamery and buy a Wish Star! All the stars purchased will help grant wishes to Wish Kids!

If that's not reason enough, you get some rocking ice cream while making a kiddo smile!

Thursday, September 3, 2009

BIG decisions

We had some big decisions to make this past week. The most crucial choice, while waiting on the transplant list, is what to do about our living situation.

We have two obvious scenarios. One is to stay in Arizona and contract an air-medical transport to get us to Loma Linda when we get the call, since flying distance is close enough to make the time frame. The other is to move to Southern California and wait there. With her being listed as a Level 2, our estimated wait time is a week to 6+ months. It's a HUGE window.

Moving to California has three possible problems. One is that we get all of our things over to a place we find to rent out and get the call just weeks later. Our burden then would be having to move our things back to storage in Arizona and cancel our rental once Gabriella is admitted to the hospital and receives her new heart. Once she is admitted to the hospital, we are eligible for Ronald McDonald house or one of the other hospital housing arrangements. The other problem is that we wait 6+ months. That's 6 months we could be in Arizona with our family, for the holidays and birthdays, and in a semi-normal environment. That's also 6 months we wouldn't have to pay a SoCal style rent, which runs about double what it does here. The last problem is PJ. Not that HE is a problem, but what are we going to do when we get that call? One of us would have to stay out with him, because he won't be able to go into the hospital. We don't know anyone there that could take him if we get a 2am phone call.

Of course, the perks to moving include being close for when the call comes. We would be there and ready, Paul's job established and running for him to work remotely. We would be local for our monthly clinic visits and if there was ever an emergency, she will be there already.

Our other option, to stay in Arizona, poses many positives and negatives as well. We would be here with our family, spending less on housing, and the kids in a familiar environment. Paul's commute would be minimal in comparison to the commute if we moved. But being tied down in our home is a problem. When we get that call and fly over, we leave all these loose ends to come back to while Gabriella is recovering, and which one of us will want to leave her??

What we have come to the conclusion of, and with the gracious offer of my mom and kindness of my landlord to break our lease, we will be moving in with my mom while we wait. They have a house big enough to where we can have 2 rooms and a family room all for us. We will be saving money by not having a rent to pay, which is a help in more than one way. We will be with our family, and if it does take 6 months to get the call, at least we were together with all of them. And if it is only a few weeks, we have all of our loose ends tied up. When we DO get the call, we will have much of our personal stuff in storage, and only the necessities to clean up at my mom's that someone can help us with.... most if it going to SoCal with us, like clothes and personal items. We will arrange air transport, and I have comfort in knowing that once I run Gabriella to the airport and we take off, SOMEONE here in the family will be able to tend to PJ for me. The weeks Gabriella is in the hospital, Paul will be able to get set up to work remotely in SoCal and we will be approved for hospital/medical related housing.

It seems like a lot... and there are even more factors I am now realizing I didn't include here but were relevant to our decision. The hardest part for us is making these kinds of decisions. Are we doing the best possible thing for our family and our daughter's health? For our future when we come home? For our extended family? The good thing is the hospital is giving us both options, and supporting us in whichever we choose, and this is what we have decided is the best. Things could always change, and we are keeping our option open. If an opportunity arises to move over near the hospital in a furnished place at a reasonable rate, it might be smart. But given what we have been given, this is the choice we made.



The OTHER big decision is Make a Wish. We had been told when we went to Loma Linda that Gabriella will be listed soon. She still isn't on the list, and I have no firm date when they process the paperwork to do so. BUT we were faced with a decision whether to go or delay it, and told it was our choice.

Pro's to going now, verses waiting until after the transplant: She is not on any medications and will be on many, multiple times a day afterwards. She is not at any increased risk to illness, but will be highly susceptible afterwards, creating a new challenge when we do eventually go. She is relatively healthy and full of energy, which can take a while to get to post-transplant. She is alive, which is something we appreciate day to day since there will be tremendous risk for the rest of her life. It is a fantastic positive boost and memory for her to go into surgery and recovery with.

Con's to going now, verses waiting until after transplant: The BIG one: We have to make her inactive the week we go, risking that a heart might have come available in those 7 days. (we wouldn't know) Shes still pretty young, and going years from now can lend a whole new appreciation for both her and PJ.

We prayed about it. Talked to unbiased people about it. We didn't want the decision to be out of selfishness or haste. This is a once in a lifetime opportunity for Gabriella, and yet we have to make the decision FOR her. Of course, if we asked her, she'd be ready to board a plane tonight for Disney World, so we kept our hesitations to ourselves as we made our decision. Yesterday, I contacted our wish team and told them we were still on board. The more we thought about it, and all the positives and negatives to both aspects, we decided it was best to not let opportunities pass us by.

God is going to provide the perfect heart for Gabriella. We have been so obedient to Him, that we have faith in knowing he wouldn't let us make a decision on our own accord if it was going to prevent Gabriella from getting that heart he has already chosen. We feel at peace with moving in with my mom and going on her Wish trip, only the peace God can give us. I feel we are obeying Him, and will continue to depend on His word, even if it changes the plans we already have in motion.

Wednesday, September 2, 2009

Thank you golfers!

To everyone who made Saturday and the Day Out for Gabriella golf event a warm (no pun intended) and loving event. Seeing those guys come in from the 110+ heat, with smiles still on their faces, was quite the blessing! Great golf was played, tons of gifts raffled off, and an awesome lunch was had!

Big Rude's Charities did an awesome job putting it all together. Apache Creek Golf Course was kind enough to arrange the lunch and a beautiful course. And so many other businesses and people like Riverview Toyota, Technology Providers and everyone who donated items! Thank you!

Talks are in the works to do it again next April!

I am a great-aunt!

Imagine that! 27 years old and I'm already a great-aunt. How awesome is that?!?!

My neice had her sweet and gorgeous little baby boy on Monday night at 1152pm. He was a whopping 8lbs 7oz, 22½" and has a full head of hair!

Congrats to KK and CornNut! We love you!

The rest of the intake visit

Let me first apologize for taking SO long to update! It's been a whole week since my last entry, and I haven't even updated the rest of the visit!

The rest of our week at Loma Linda was good. We met with one of the transplant surgeons as a general consult. He reviewed Gabriella's case, got to meet her and gave us a few bits of information. The best part of that visit was when he said "The easy part is the surgery". Which, in all reality, is the truth. It's the preparation and the after-care that are the difficult parts. But remind me of this as I sit for 6 hours waiting for my baby to get out of surgery, will you?

We had a day of clinic, which is a practice we will do twice a week post-transplant. It is first come, first serve, so getting there at 8am is wise. You meet with a doctor, nutritionist and have bloodwork done. They decide at that time if anything else needs to be done. The nutritionist told us Gabriella is technically mal-nourished. Her height works against her. Being over 44" tall and only 37.1 pounds, it gives her a BMI of under 13, not even touching the curve set for healthy. She gave me a list of things to try, and it is my goal to have her at least on the curve by our next visit. Adding whipping cream to cereal or milk, oils to her mac n cheese, and pushing high calorie foods. Unfortunately, her body is working so hard to maintain a normal blood flow that she is burning calories quickly, therefore not able to keep weight on. So basically, I have to give her all the foods I avoid. LOL.... They drew blood. Twice. The first time they didn't draw one test they needed and had to go back in for more. Poor, brave girl. The doctor also ordered a chest X-ray since Gabriella's cough is back full force. We didn't get the results before we left, but just got them this past week. I'll post more on that next. We go back in a month for another clinic, and will do this monthly until transplant time.

We drove home that day after clinic, with a lot to think about and prepare for. We stopped for lunch at Bob's Big Boy only to be the recipients of an amazing reminder of God's angels in our lives. After we ate, I took Gabriella to the bathroom while Paul waited for the bill. When we came out, he was up front waiting for us. Turns out, a frequent customer of theirs paid for our meal, unknowing of our unique family situation. We told the waitress about what a blessing it was and where we were heading from, and gave the manager and waitress Gabriella cards and pins. We gave them an extra for that loving man that blessed us that day, and I hope he gets it.

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