Thankfulness

"I am thankful for my family and friends, my faith and for the things I have worked hard for."

That's probably the most common categories to be thankful for, right? Being thankful for those things is fantastic, and I too am thankful for those very things.

But how thankful are you..... really? Can you say you are thankful for financial hardships? Fights with a friend or family drama? For the flu your whole family got, back to back, that drained you? For the days you didn't even get to shower because your kids were terrors? For the stress at work that kept you from sleeping? For the mistakes you made? Can you find the light in YOUR dark situations this year?

For me, I think this is the first year I can say I am truly thankful in the purest sense. The first year my understanding of thankful has a rounded and complete definition. I think it is because I can look at every negative thing that has happened over 2009 and see why God had it happen, and how it changed a part of me and my family for the better. I wish I could accurately describe the feeling I have when I think about being thankful, but the words escape me.

I am thankful we 'lost' our house this year to the economy and short-sale, just 2months before Gabriella's diagnosis. Over the long term, it was actually the best thing that could have possibly happened. We were able to rent for a few months at a much lower payment, allow me to stay home with the kids in June when her heart condition became more demanding (and allowed me to be with her when her stroke happened as opposed to at work), and easily move in with my mom to prepare for the transplant call.


I am thankful we struggled financially. I am thankful we sold all we own and stripped our life of excess. It could have been thought of as 'loosing' all we worked for and gained over the years, but I choose to not think that way. I have been forced to become a super-saver, following blogs and other online resources, and getting great deals. Working hard on saving tons of money to buy things like a new body wash or pair of jeans naturally forces us to better appreciate the item we purchased, and better decide what is necessary to purchase and what is a frivilous buy. When we rid our life of the excess things we didn't NEED, we found a new appreciation for the things we did have. We sit here today, with only about a quarter of the 'stuff' we had coming into 2009, are are no more needy and no less equipped than we were then. We appreciate what we have, respect what we acquire and work diligently to preserve our money for the future. Struggling has taught us fantastic lessons that couldn't have been learned any other way.

I am thankful for my tested marriage. As parents of any special needs children know, the struggles of a special needs marriage is unlike anything a normal marriage could experience. I love THIS ENTRY on marriage written by another heart mom I follow and think is a doll. She describes just a taste of the side-effects we share as a couple. But what doesn't kill us makes us stronger, right? And boy does that token phrase hold true to a relationship- of any kind. For my marriage, no matter how much stress and strain we face on a daily basis, I am thankful that he is the one I stress and strain with. God put two very different personalities together to be able to both face this in our own ways, yet together.

I am thankful for my tested friendships. I remember something very similar happening when I went off and got married and had kids before my friends. It was difficult. It tested the strength of those friendships. I was entering into territory they hadn't yet been to, and the stress it had on those friendships was significant. The club hopping, girls nights, weekend trips, etc.... it all changed because of my new responsibilities. Yet again, I am facing the same thing through being a special-needs parent, though they will not be following. My availability to go grab coffee or have dinner with a friend is limited or impossible due to finances, therapies, medicines, transplant listing, or even the fact that I cannot leave Gabriella because of her communication limits. It is impossible to even share my true struggles or feelings because they are so specific, no one would understand. But this seemingly negative idea that my friendships are struggling are not that at all really. My friends have reached out in different ways to try and accommodate me being such a high-maintenance friend. In turn, I have formed a different appreciation for my friends than I did before.

I am thankful for my (extended) family. Simply said, without all my siblings, in-laws, nieces and nephews and everyone with a family relation, I would sit here nearly empty. When I have a weak or difficult moment, there is always someone there to help me keep going, even though they might not even realize they are doing it. The joy Gabriella has when her family is around is priceless. I have full comfort in and have seen the actual proof that my family would be there at any time to do any thing any where to help us. There's not much more comfort on this planet than that.

I am thankful for Gabriella's failing heart........ (pause, absorb, read on) No, that's not a morbid statement. So many people in the normal world say they are thankful for health, and (praise be to God) they should be more grateful for that than they even realize. In our world, we are thankful for Gabriella's illness. This was what God planned for Gabriella, for her heart to fail her, for her to have a stroke, for this innocent little girl to experience this. This is not something I can change, but we were blessed to find this silent condition before it was found in a trauma scenario... so I sit and think of all the good that has come of this. The people it has brought into our lives and blessed us to know. The person/ mother it has transformed me to be. But most of all, the people she has reached with her story. She has touched so many lives already, and has yet to even survive through the actual transplant and show the world that anything is possible. The amount of people who have sat and spent time talking with God because her heart or stroke lead them to do it. The people who have told me they 'aren't the praying type' but break to their knees begging for Gabriella. The CHILDREN of so many friends and strangers who sit at night before bed and pray for Gabriella- probably one of the most filling thoughts for my soul. I am grateful that a situation with potential to be tragic has turned out to be such a God-centered experience that has drawn people together.

I am thankful for one of the most difficult years in my 27 years of living. Funny, because when I think back to my posts at the end of 2008 about what a 'dreadful' year it was (rolling my eyes), and how terribly I complained, I can SEE the difference in me. I am such a different person now. I recall a reader commenting on an newspaper story online written about Gabriella, and he took the time to read my back-blogging. He called me a train wreck. To be honest, he was right. We did have hardships in 2008, and due to the way I handled it, I was a train wreck. Now, I just consider myself a conductor of a very complicated, overfilled and unsteady train.... but it's on track and moving forward, and I'm smiling while I drive.

I am thankful for my faith. Without my faith, without my God being the one solid constant in my life, this year would have defeated me as a person, and us as a family unit. It's so simple, yet so complex, how much my faith means to me.

On this Thanksgiving, no matter what your story may be, make it a point to focus on one seemingly negative event that happened this past year. Really think about that, and what you can be thankful about from that situation. If I can do it, so can you.

God bless everyone this weekend. Make memories. Take pictures. Think positive. Be thankful.

Halloween Pictures

Finally!

We went the weekend before Halloween to Schnepf Farm. It has kinda become a tradition for us. This year was more laid back, just walking the farm and indulging in some yummy kettle corn and cinnamon roasted almonds.

We made the most out of Halloween this year. We started the day by dressing up at noon and heading to Malloween! The kids trick-or-treated from store to store at Desert Ridge Marketplace. It was super fun, but super crowded. I was a nervous wreck about germs, but we tried to keep to ourselves. Worth the trip up there though!


Rosetta from Tinkerbell


And the cutest cowboy ever, Woody





We went later that evening to Trunk-or-Treat in Queen Creek. It is a huge, free event they throw every year and most definitely worth going to! They had live entertainment, booths, rides, activities, and trick-or-treating along an endless row of trucks and cars, sponsored by businesses in the area, decorated for Halloween! Each car gives out candy provided by the Town of Queen Creek, and it was super fun!!!!!


Random ATM





The sweetest story about Princess Aurora painting Gabriella's face. She was asking Gabriella questions, and all of them were where she could nod her head yes or no. Well, she asked Gabriella a question she had to answer, so Gabriella looked at me. I explained to Aurora that Gabriella had a stroke and it took her ability to talk. Aurora told Gabriella, "It's ok princess, you don't need to talk. I'll sing you a song" and continued to sing her 'Once Upon a Dream' in the most beautiful voice ever. It was a fantastic moment, and had this momma in tears!

So it was nice, not doing the traditional door to door. With the kiddos being so little still, the fun of being dressed up all day and having activities included in ToTing made the day more enjoyable!

Adding pictures to old entries!

For the sake of keeping my blog chronological and accurate, I am adding pictures to old posts. I have been without my camera for a few weeks!!!

Below are links to the old entry. Please click on each one to see the pictures!


September 12, 2009 PJ's 2nd Birthday Party

October 5, 2009 A much delayed update: Day 11

October 7, 2009 So exhausted... but here is a Wednesday Update

October 15, 2009 Last week at the hospital, in pictures

October 19, 2009 Settling in

....I Cherish

The day before Gabriella's stroke, we were at Loma Linda University for our monthly clinic visit. We drove to SoCal on Wednesday and went to Disneyland for a few hours that evening on our annual passes before our Thursday morning appointment. My brother in law went with us, since Paul had to work. Those few hours that night I cherish. We didn't buy any souveniers, candy or photos. We rode all of Gabriella's favorite rides and enjoyed being in her most favorite place. Not a penny spent, yet the memories are priceless.

Here are a few pictures from that night, the last pictures before her stroke. The very last picture of her before her stroke was with me, and I will forever remember that picture.

She's back!

Thankfully, the hospital released us last Friday. After a good 2 days of fluids and IV antibiotics, Gabriella perked up and got her energy back. She since then has been eating like a champion and drinking plenty of fluids. Even her cough has pretty much disappeared. Taking her in and having them treat her definitely helped get her out of the hole she was in. She looks healthier to me now too. Her eyes aren't as sunken in and her skin looks supple. Thank heavens it was a quick stay! Especially since though Cardon Children's is amazing in its facilities, there is nothing like the staff and morale at PCH.

Sunday, since she was doing so well, we decided to go make our Christmas list. I started to think a couple weeks ago, as we stood by Santa's throne at the mall, how is Gabriella going to tell Santa what she wants for Christmas? It quickly came to me to make Santa a picture book. So, FunSavers in hand, the kids went to their favorite stores and took pictures of the items they wanted to ask Santa for. We first went to the Disney Store, then Target. They filled up 2 cameras EACH of items they wanted to ask Santa for! We developed them (I forgot how expensive normal film developing was!) and made them little brag books of the items. They are so excited about their books, and can't wait to show Santa!

Today we met with the Rehab doctor as a hospital follow up. Gabriella has a little girl crush on Dr. Jeff, and was awfully excited to see him today. We got to hang out with our favorite Occupation Therapist, Cindy, for a bit before the doctor came in. I feel a true friendship with the people who helped Gabriella at PCH. Dr. Rabin came in and checked Gabriella out. Checked her walking, balance, muscle function, arms, proportion and quizzed us on her progress. He also gave the kids more candy than any doctor should give a child, but it was cute. He is recommending an assistive audio device for Gabriella to use as her bridge to communication, since her language is coming so slow. He said sign language is probably not the best route for her because she could potentially use it as a replacement to speech and not an accessory, but thinks an assistive device could help a lot in building her own speech. Basically, she pushes buttons to make it say what she needs to get across. He said he has seen great progress in speech with such a device, because it triggers her own attempts to say the word as well. Fascinating, yet all I could hear while he told me about it was "cha-ching!". We are going to set up for a consultation for one, and see what insurance will do to help. He also prepared me for something I was recently brought to consider. While watching So You Think You Can Dance last week, there was a short story of one of the dancers and her brother. Her brother had a stroke when he was younger, and it impaired his ability to speak and his arm. Shockingly, a very similar stroke to the one Gabriella suffered. He was speaking, with a speech impediment, and his arm was smaller and underdeveloped in comparison to his other arm. Today, Dr. Rabin brought to my consideration that that will most likely be Gabriella. he said we will be watching for a difference in growth and development, and to be prepared for a significant difference. She has only had 4 years to grow before this happened, and has the next 16 years or so to keep growing. Chances are, her right arm will be significantly different than her left. Yes, it will make her special, and she will manage just fine, and she will use it and triumph. Those things I am not worried about. As a mother though, and knowing what a perfect and 'normal' little baby she has been since day one, I struggle with the thoughts of kids possible making jokes about her. Or I worry about her own personal hardship of knowing she looks different before she can mature enough to embrace it.

She has so many other reasons to be different and unique with her heart and the story she has to tell of that, and now she has been given challenges of a physical handicap aspect. I just don't understand. But I surely hope 20 years from now to sit here and say, 'OK God, I see what you were doing now'.

Gabriella was printed on the front of the Gilbert Paper today!

Check it out!
Stroke deals a setback to 4-year-old girl needing new heart

Back to the hospital

So as I posted yesterday, Gabriella was diagnosed with Pnemonia. I also mentioned her eating issues and severe weight loss. These last 2 days have proven to us that she is not going to improve. Today she has not eaten more than a half piece of sausage and has thrown up any other attempts at eating we could convince her to eat. She looks at food with sheer disgust, and is now not even drinking much. I can't even get her antibiotic in for her pnemonia. She has been so lethargic today we decided it couldn't last much longer this way at home.

We spoke with her Ped and cardiologists and decided the quicker we could get her treated the better. Not eating and drinking is going to hurt her tenfold what it would a healthy child. And not treating this pnemonia could be detrimental to her condition. Since her Ped has no priviledges at PCH to directly admit her, we had to decide to either wait in the ER for PCH or go to another hospital. Of course PCH was ideal because they have her history, but because of the need to keep her out of cootie zones, we decided Cardon Childrens was best for this trip.

We are sitting now in her room at a 9 day old hospital. (Later I can rave about how this place is like a resort.) Just to make me look like a hypocondriac, Gabriella managed to walk down to the galley, grab snacks, eat a bow of cereal and drink some milk. Go figure. The doctor came in and we went over Gabriellas history. They will start IV fluids for hydration, swab her for flu, do another Xray and start IV antibiotics to fight this pnemonia. I'm praying a NG tube is not part of the plan, but if we can't get her to keep down food I see it being a strong and quick possibility acutely.

So basically, we are here because she is dehydrated, malnourished and has pnemonia. I'm hoping we can get her to a better spot physically and be home by the weekend. Poor kid needs a break, and I am hopeful it will happen soon.

Weak little one

Regardless of my feverish attempts at keeping my kids sanitized and free from germs, I have failed. Sure, we went a few places here and there, but it was always in the stroller, not touching anything and using sanitizer. Besides the fact that with as many doctors appointments, therapies and tests/labs we go to on a weekly basis, I presume there is no way to fully avoid the dreaded cooties.

PJ came down with a head cold last Friday early morning. He started the barky drainage cough, and turned into a daylong fever the next day and was better by Sunday. By Sunday, Paul and Gabriella were both down with the crud. Gabriella was hit hard, spiking moderate fevers and looking frail and beat. Paul went to the Doctor Monday and was given antibiotics for a sinus infection. Gabriella, on the other hand, only got worse on Monday with an angry cough and consistent fevers. When the cough started to sound wet and rough Monday, my pediatricians FANTASTIC nurse made me an appointment to come in Tuesday morning. The lovely thing about our ped is that due to Gabriella's heart status, and our need to keep her as healthy as possible, they have us sign in and take us RIGHT back to the room to wait and has us leave out the back door. Anyways, he reviewed Gabriella and immediately said what I knew he was going to.... X-ray to check for pneumonia.

Wanna hear a funny story? We went the the imaging place and I signed in. I stood in the center of this uncomfortably small room, chairs filled with angry and unhealthy looking people, and held Gabriella so close to me I could feel her heart beating. I asked the receptionist how long of a wait it was, and she said over an hour. Panic mode set in. I asked if I could make an appointment or call ahead and she said they made NO exceptions, it was walk in only. I could almost SEE the germs floating in the air. All I could think of was that IF Gabriella did have pneumonia, I was exposing her severely susceptible body to more germs. I felt this insane feeling of anxiety and panic over me and scratched her name off and left. I told a friend, I felt like Bob Wiley on the movie 'What about Bob?'. My doctor's office called and got that 'no exceptions' thing taken care of. We went back a couple hours later, and waited in a back room for the X-ray. I felt much better about not having her wait in that area with all of those sick people, yet still had my sanitizer pump sticking out of my purse. Nothing says designer bag like a bottle of Walgreens foaming sanitizer!

Results came back tonight. Doc called to let me know she had the beginnings of pneumonia, and he wanted to start treating her right away. She is on a 10 day round of antibiotic, and we are putting her back on Singular since it seemed to work so well when they had her on it pre-stroke. We started the antibiotic tonight, and not an hour later she threw up anything in her tummy. Hoping we can get doses in tomorrow!!!!! I want nothing more than to kick this at home, and not end up back in the hospital!

This just goes to show how weak her immunity is already. A simple head cold so quickly took a turn on her and turned into pneumonia in no time. Her body just cannot muster up the energy to fight off illness like other kids. Aside from her heart failing, she is rapidly loosing weight, which makes her even weaker. I cannot get her to eat ANYthing of caloric value anymore, drink ANY nutritional drinks, nothing. People are mentioning it like her ECHO tech and therapists. We were a script away from a referral to a nutritionist last week from our Cardiologist, who would surely resort right to a NG tube on the first visit, but I was able to buy her another month of trying to gain some weight. She is petrified of getting another NG tube. We are going to be consulting with Loma Linda tomorrow on an appetite stimulant her pediatrician is recommending, and I PRAY it's safe for her and effective in getting her to eat something. We have until mid-December to fatten her up before we are sent to someone for it. Right now she is 45" tall and she is down to almost 36lbs- not anywhere close to being healthy enough for transplant or recovery and I know Loma Linda is going to have a fit when they see her in January if we can't get this improved. I offered being a donor for a fat transplant, but supposedly that isn't available yet.

P.S.- Oh yeah, I got the head cold, too. But Mom has no time allowance to be ill, so I was forced to suck it up. ;)

For those feverishly waiting...

for Halloween pictures, I left my camera at my brother'-in-laws' house. Once I get up the energy and free time to drive the 1.4 miles to his house, I'll post pictures from Halloween!

Memories... All alone in the moonlight

A gentle and loving friend of mine posted tonight about her precious Sugar Bear, same age as Gabriella, and how she is in dance class this fall. (cute as a button, if you ask me!) I loved looking at the pics of this 4 year old beauty, who radiates sunshine from her every pore. I personally think preschool age dancers are the cutest things on the planet, anyways.

But, it had me instantly in emotional ruins as I thought about how Gabriella would be 2 months into this session of dance. How gorgeous she was as a dancer. How much she loves dancing. How amazing she did at her recital in June. How she was SO chatty with other little girls in her class and would tell stories or show off new earrings. I typically haven't been the kind to get instant envy or selfishly emotional when others sweetie pies start a new activity, achieve something age appropriate or have a 'minor' illness to contend with, because I think it is ALL important and we are all given our own path AND pace at life. Lack of sleep might contribute to my ease of emotions.

On that note, and to attempt to theraputically relieve my crushed heart over my dancer missing out this year, as well as introduce a different part of Gabriella to all the newest readers, here is my recital post from June 8: TINY DANCER She was so amazing, and to me was the only one on stage! Conveniently, she danced to Memories from Cats.

Noodle

There have been a few of my mommy friends who had sent care packages in the hospital and a BUNCH of 'strangers' that have responded to a local friend's call for support and have been sending Gabriella cards and postcards to perk her up since we have been home. I cannot even begin to say how much it means to me, and how every little card or goodie for Gabriella puts such a smile on her face. I wish I had the time and could send back a 'thank you' card to everyone, so please accept my thank you here!

One special thing I am so excited to brag about! Rewind back to last week. I got an email that popped up on my handheld external brain that said I was chosen to receive a 'free deserving spa day' and was nominated by my friend Heather. I had to call her to make sure it was legit, because it came as such a surprise! Sure enough, it was true, and I called to make my appointment! The times they gave were narrow, and of course conflicted with all of Gabriella's therapies. I managed to work one in on a light therapy day. I went in and got a completely complimentary facial, massage with hot stones and hair wash and style! It was absolutely fantastic and I realized after how much I needed the quiet and calm and relaxation! I don't think I have ever had a better facial OR massage! I seriously felt like a noodle afterwards!!! It was honestly a fantastic one time opportunity, and probably won't be able to do anything like that again for decades! So thank you, Heather! It was so thoughtful to nominate me and I love you!

November already?

November 2. How did that happen? Though the temperature being in the high 80's and lack of turning leaves cause fall to seem like a foreign subject, the reality of it is Thanksgiving is 24 days away.

Gabriella is doing so well with her speech. She is making a TON of sounds, and the goals in therapy right now are to start combining those sounds to make words, and teach her to use those words purposefully and correctly. She is using Mom, Papa, Wow, More, Baby and Ow in context. It is my own personal goal for her to have 20 accurate words by Christmas, using them in the right context. Therapy is more an accessory now, rather than how it was our main tool inpatient. We are doing much more learning at home, and she is starting to not rebel when it comes to Mommy teaching her sounds and words, thank goodness! Her right arm usage is slowly but surely coming back. We finally got her OT schedule together and she will be meeting with 2 separate people, alternating weeks. They see it as a problem, but I think it will be good for her to get different styles and techniques. She's like me, she needs variety and options. Hopefully she can get a decent amount of beneficial usage out of that arm eventually. Some days are better than others, and I notice when that arm gets tired, she pulls it up to her abdomen and holds it there. BUT we are faithful it will come back!

Gabriella is on a schedule to change her Insuflon catheter for her injections once a week- on Sundays. Last Sunday, we put one in and by Tuesday it was looking bad. We were noticing a bulge at the end of it, and by Wednesday a small bit of blood at the site. By Thursday, the bulge was huge, she was bruising excessively and the site was bleeding badly. We had to take it out that night. I tried to install a new one, and put it in too shallow due to her moving too much. Talk about a blow to my heart. It was super late, we kept her up so the Lidocane could kick in and I failed getting it in. We were forced to give her the injection in her leg (terrible because her biggest fear is still needles) and try again in the morning. Thank goodness, I got it in Friday morning just fine, but it still broke my heart I poked her and it was useless, and we had to put her through getting that shot. Hopefully only 8 more ports!

The kids are adjusting very well to living at my mom's. They share a room, and much to my surprise there is very little issues with that! They are doing SO much better with Harley, my mom's yellow Lab. We have managed to sell a few more things that went into storage that we didn't need to keep through this transition.

We have cardiology tomorrow. The basic appointment for Gabriella.... EKG, echo and see the doctor. I am just praying SO hard there are no negative changes!!!!

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