Sunday, October 25, 2009

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.

Monday, October 19, 2009

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
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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
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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!!!!

Thursday, October 15, 2009

Last week at the hospital, in pictures

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More Therapy Dog!

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Momma time with PJ at the Ronald McDonald House

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Physical Therpay with Nushka

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Going home!

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Crashed out exhausted on the ride home

Wednesday, October 14, 2009

SortaCrunchy Online Event

THE EVENT IS BACK IN FULL SWING!!!!! PLEASE VISIT THE LINKS AGAIN FOR INFO!!!!

Many times in the past, I have dedicated so much of my parenting quirks and success to my "mommy friends". A group of women I was involved with online starting mid-2004 as we all discovered and prepared for our January 2005 babies! I have come from those message boards with some of the most fantastic relationships. I have so many friends from so many different lifestyles and regions of the world. Every single one of them means so much to me because they are all part of the building blocks of my motherhood.

One mom, who writes one the most fantastic and uplifting blogs, contacted me wanting to help after Gabriella had her stroke. She is so patient, loving and faithful... and it is so easy to feed off of her energy. I cannot help but to think positive when I talk to her or read her blog. When someone approaches me, wanting to do a fundraiser for Gabriella, I never quite know what to say or how to say it. I have never been one who 'receives' well... I would much rather give. It fills my heart, because I DO understand the act of the fundraiser itself is an act of love and the way people want to help from a distance, but I feel so awkward accepting. I spread the word on my blog so the person arranging it gets the support their hard work and efforts deserve, but feel so weird doing it. I am trying to keep telling myself that no matter how many times I think to myself that we can do this on our own, and we do not want to ask for help, we truly do need the help. I tell myself God will provide the means and finances for deductibles, co pays, medical travel, living essentials, etc.... but I have come to realize God is providing that through people's willingness to arrange support for Gabriella, in conjunction with Him teaching us about this simplified lifestyle where we do not need to indulge in things we don't need. Tangent, I know... but I was lead there and felt compelled to write what I was thinking.

ANYWAYS, through her blog she has arranged a raffle for Gabriella. Selling 'virtual tickets' to win a multitude of amazing prizes! Please visit her blog to see everything she has to offer! And if you cannot participate at this time, don't feel obligated! But I DO encourage you to read her past blogs! She is a fantastic writer!

Please click here to visit Sorta Crunchy, and tell a friend! But most of all, our deepest appreciations for always being either a financial, emotional OR spiritual support!

http://sortacrunchy.typepad.com/

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.

Friday, October 9, 2009

Connections.

Being here in the hospital has allowed us to connect with others in a different way. We have met so many new people through things like blog comments all the way to run-in's at the hospital.

As we were sitting for movie night tonight, I saw Dr. Graziano talking to a family. I couldn't help but think back to when he came out to us to tell us about the results from Gabriella's cath.... crushing our world. Nice guy, he just had bad news. The family started walking back to see their beautiful little girl, when mom stopped and asked if I was Gabriella's mom. Oh my. A million thoughts ran through my head. How wretched I looked (Gabriella lost my only little hair clippy that was taming my once cute and flippy and now fluffy hair). Also, my clothes... and how I look like I dressed from the lost and found bin because my tops and capris or sun dresses are not-so-neatly lost in boxes at my moms house until we get home to organize. But proudly, I claimed the title and directed my glance at Gabriella. She told me her name, which was a name I immediately recognized from the heart blogs I follow and from my own blog followers. Her beautiful baby was having a heart cath done, and we were able to briefly cross paths thanks to our unique position as heart moms. I'm thankful for those few moments, and hope they can blossom to be more! To all my prayer warriors, please keep her and all the other heart families in your prayers. There is so much these babies face, and so much us parents face, that are indescribable. Amazing things have happened through prayer for Gabriella, and there are so many more out there dealing with heart issues. Each unique in their own, but each similar in one solid way.

As I was settling Gabriella down for bed, I called Paul to have our couple minutes of peace talking. He told me about how he ran into Kate McRae's mom at the RMH and spoke to her for a while. My sister in law and I met Holly quickly back in July after following their story from the beginning, when we were here for Gabriella's heart cath, and couldn't help but fall in love with sweet Kate's face. Paul was able to reach out to Holly and express our support and prayers. He was wearing his Kate band that he wears proudly every day on the same arm as his Gabriella band. We have felt such a connection to them though they never knew us. But the struggles of dealing with a sick little girl, watching their innocence being stripped away while they have to learn to deal with adult things, we shared. Watching the way they interact with their siblings or friends or cousins get ripped away by right-sided movement loss and medical needs. Preparing for the days of immunosupressents and transplants (bone marrow for Kate, and the obvious for Gabriella). Even the fact that they both had their wish granted through Make-a-Wish and picked the same place. Not knowing what God has planned for the next 20, 10, 5 or even one year of their life. Though different reasons, similar struggles. I can't help but picture Kate and Gabriella together in my mind on a frequent basis, and I feel this indescribable feeling of strength and energy. How amazing for God to place some of the most courageous, strong and beautiful souls into these 2 fair little beauties. So I ask again, to pray. There is an entire floor in this hospital, right above our heads, of children suffering the effects of cancer. A floor of fighters. Every night we pray for God to have his hand over this hospital and all the children in it. As wonderful as it is to have a hospital dedicated to children, it is heartbreaking to think of children having needs like this.

I ask everyone to pray... a lot. It is only because if there is ANYTHING we need most in this journey, it is prayer. It's the easiest thing to ask for, the easiest thing for people to give, and the most beneficial gift to receive because we are so faithful and reliant on God. In turn, know we pray for every one of you. We thank God for the people in our lives that we do and do not know. We pray that the kindness of your prayers and supportive words you lend are shown back to you tenfold. We plan to pay it forward... and hopefully will be able to get involved in the same things that have blessed us like the RMH and Make-a-Wish. You are making an impact on us... and we thank you.

Thursday, October 8, 2009

Live-Love-Dance Gabriella Necklace

A sweet friend of mine who runs an etsy shop created a special necklace to support Gabriella! It's gorgeous, and is just another way to carry a piece of Gabriella's heart with you!! Please check out the necklack in her shop, and see all the other great items she has too!

Gabriella Necklace

Parents R People

One of the writers for this awesome Parenting website contacted me a month or more ago about featuring Gabriella on their website! I wrote an article and you can check her out on ParentsRPeople.com at this link: http://www.parentsrpeople.com/564.html

And make sure you navigate the website, too! There's some fantastic resources, stories and tips for parenting and life!

Live Love Dance Gabriella Necklaces

A sweet friend of mine who runs an etsy shop created a special necklace to support Gabriella! It's gorgeous, and is just another way to carry a piece of Gabriella's heart with you!! Please check out the necklack in her shop, and see all the other great items she has too!

Gabriella Necklace

Parents R People

One of the writers for this awesome Parenting website contacted me a month or more ago about featuring Gabriella on their website! I wrote an article and you can check her out on ParentsRPeople.com at this link: http://www.parentsrpeople.com/564.html

And make sure you navigate the website, too! There's some fantastic resources, stories and tips for parenting and life!

Wednesday, October 7, 2009

So exhausted... but here is a Wednesday Update

Day 13 coming to a close. I miss my bed. I miss getting 'fixed up' for the day. I miss Gabriella strutting the house in her play shoes. I miss her sassy back talk, too. I miss my PJ imitating train noises with his Geotrax. I miss cooking. I miss cleaning (yeah, I said that). I miss being together.

I wanted to post an in depth entry tonight, but I am so beyond tired I just can't do it. So here are the cliffs notes versions....

Basically, we won't be going home this week, but there is talks of it being possible next week. I can't wait to get her home to her brother and her things and her cousins!

We are going to hold off on another MRI to check the clot for about 4-6 weeks or so.... to eliminate putting her under anesthesia more than necessary. We will get a better idea 6-8wks post stroke as to the speed the clot is disappearing. God, let your will be done.

I have been able to get the doctors to wean her off all meds she was on with the exception of her Atenelol (for her heart), Lasix (for her heart, also) and the new blood thinner shot given twice daily- all 3 are our "go-home" drugs. It is so nice to not be giving her all this extra junk all day long when she doesn't need it anymore.

Dr. Alhadheri came by for a visit yesterday, which warmed my heart. Truly, a visit... not eval. He is such a great man. For the heart transplant, it looks like the goal is getting that clot fully broken up before listing her. Possibility it could take several months, so pray pray pray. It was our original specific prayer request that the clot dissolve, not cause any other issues and shock the medical staff by God's healing power! I believe it can happen! Dr. A will have more information after he consults with Loma Linda and finds out their plans.

A new neurologist saw her today who only knew Gabriella based on the numbers and notes... and was beyond impressed by her progress and status less than 2 weeks post stroke when he met her. Made this momma proud of my girl!

Gabriella is severely crushing on the rehab doctor. I can confirm that she has good taste, but it's blatantly obvious she is smitten for him. And I think he thinks its adorable because he eggs her on. That's the same ole Gabriella!

PCH * might* be using her in one of those 'faces of Phoenix Children's' thingies. They want to share her success and her adorable little mug! Can you blame them?!?! Hopefully, more details to follow!

Please say a little side prayer for Gabriella's sleeping. Since her stroke (Left MCA, if I have not specifically mentioned what kind), she has 'brain damage' to a certain extent causing irregularities in the way her brain fires its information. This causes typical emotions to be heightened like tantrums or sadness. It also causes her to have occasional erratic behavior. In play it comes out as aggression. In frustration it comes out in major tantrums. In sadness it comes out as completely shutting down emotionally. But in sleep, it comes out as all 3- in crying, thrashing, agitated sleep interruptions that scare the living daylights out of me. Last night we had 4 episodes of it. Please pray her nerves calm and she can restfully sleep through the night. We have been trying Melatonin to help her fall asleep and keep her sleeping soundly, but it is not working on the 2nd part.

Have I told you all lately how much I appreciate all of you? Good night, and may you feel God's amazing blessings like we have through compassion and love!!!!!

ETA: Pictures added November, 2009
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One of the many excellent therapy dogs!

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Appetite coming back.

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Scrapbooking night

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Playroom time

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Her favorite therapy toy

Monday, October 5, 2009

A much delayed update: Day 11

Excuse this entry if it seems all over the place. I've been writing it, interrupted, for hours.

Today was day 11 in the hospital. It feels like both time has stood still to things in the real world and lasted forever inside these walls. It becomes harder everyday our family is broken apart, and even worse when my babies communicate through the glass window of the lobby.

Therapy is going amazing, mostly. We have a firm schedule set up for therapy, meals and naps. It limits our ability for visitors to 4p to 8p weekdays and anytime on weekends, but we are here to get better and get out so we will sacrifice free time for work. Daddy went back to work today so Gabriella and I are sticking to a firm routine to pass the days.

Gabriellas physical therapy is almost unnecessary, she is walking so well. They are working on her arm now to help with occupational therapy- which is also doing great! She has great range in her arm and her strength is increasing daily. We are working on elbow and wrist motion, and zoning in on controlled movements.

Speech is another issue. The combination of her apraxia and aphasia is so severe, the learning process is much slower. I can see how and starting to accept that regaining her vocalization will take a long time. It astonishes me really. How God gave me such a verbal, opinionated, sassy girl and now took her voice. He never let's me down- constantly giving me pieces to this big picture only he can see.

Some good speech things, on top of Gabriella saying the words 'more' and 'mom', is she is humming songs (we have been singing to her and she's catching on) and she unintentionally says some things like 'no', 'one' and 'watch'. Its subconscious because she can't do it again, but nonetheless happening. Its a sweet sound.

We found out today that our insurance only covers 60 days of outpatient therapy. And on that, we have to pay $25 for each session. Its going to take a lot longer than 60 days to get her talking again. So we are starting to pray God gives us means to get extended therapy.

We had movie night last Friday which was super fun. They turn the surgical waiting area to a mini theater and served popcorn and juice. We took dinner down there and watched the movie with some cousins and aunts. <3 and today we had a chance to meet Mike Leach with the AZ Cardinals, though Gabriella ignored him. We do lots of painting in the free times and walking the halls between classes. I get so stir crazy in our 10 by 6 foot half room so I keep her busy.

We have been so blessed by so many people through this. I can't even begin to pay back the blessings, but will try, and will pay it forward as well. Hopefully I can get online and post more with pictures tomorrow!

ETA: Pictures added Nov 2009


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Saturday, October 3, 2009

Children are gifts

My cousin wrote this on her facebook status. I hope its ok I shared it!

A reminder of how amazing kids are. I wish we would all keep this kind of generosity and true compassion as adults!

"So my 8 year old tells me on her way home from school that she wants to go give her heart to Gabriella and she will try to find another one! (Her sister) tells her you will die and she says "it is better to save your family than yourself huh mom?" Wow...I am still fighting back the tears!!!"

Thank you to everyone who attended the flight fundraiser today!

Though my time is limited to type a full entry, I wanted to say thank you to everyone who went to Williams Gateway today to support Gabriellas flight fundraiser! Some very loving representatives from our family went out to represent Gabriella and share the facts of her condition and treatment since I was unable to make it out there. I hope you got to meet them!!! The staff of **** also did a beautiful job gathering resources and people to pull together what I'm sure was a beautiful event!

We thank you from the bottom of our hearts, and the bottom of Gabriella's new one!!!

Thursday, October 1, 2009

Thursday - Rehab - Progress

Last night we had our talk with Gabriella, about today being a new day and how it was okay to smile.

Today we woke up. A new day. Gabriella has been amazing today. So much progress. So much hope. So many smiles.

The morning started with the normal nurse evaluation. Nurse Michael asked Gabriella to see if she could lift her arm. I expected the normal reaction, a little shoulder motion and we follow it with encouragement and praise. But this time was so different. Gabriella lifted her arm clear off the bed! She used her shoulder and bicep muscles and lifted the 'lazy arm' right up! PRAISE BE TO GOD!!!!!!! The look on her face was priceless, and you could tell she BELIEVED it was a new day!

We started the therapy day with music therapy. A super amazing guy came in and played the guitar for Gabriella. She really enjoyed the sound and was starting to break the wall she built. I asked her if she liked the music and she nodded. He brought in multiple instruments for her to play and she really enjoyed them!

We followed it with Occupational Therapy. Gabriella sat on a big platform with Miss Cindy and knocked little toys off with her now 'not-so-lazy' arm!! Our newest doggy friend came in and she played catch with a ball with him. She was all smiles with him! He helped us outside in her wheelchair, as Gabriella held his leash. I can't even tell you how great I even felt to get her outside.

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We came back in for speech therapy. They got her some soft foods to try, but she really wanted no part of the therapy. We attempted Physical therapy too and she did pretty for a little while. It was time then for a nap, so we came to the room to rest. Though she didn't sleep, she relaxed for a while!

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The nutritionist came in and suggested a new NG tube, which I politely declined. I didn't feel we had really worked on eating yet, especially today when she is in better spirits. She ordered nutritional drinks and was a bit unsatisfied with our unwillingness to do another NG. But I am not allowing her to go backward if I have the power, and until it puts her nutritionally at risk, I will not give in.

To offset the NG news, the hematologist came in and said the full workup of blood they did on Gabriella came back. They were searching for ANY other possible reason for the clot besides her heart, i.e. clotting disorders or blood issues. It came back completely clear!!! Which means, once we get past this, get her a new heart and recover from that, Gabriella won't be at risk anymore! No worries of another stroke. No worries of a heart attack or failure. Just a normal little girl starting Kindergarten or 1st grade and dancing her little butt off. I can't help but smile at that great news!

She also took a break to play some Bejeweled on my phone.... sassy diva. :)
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We went back for some more speech therapy and she did AMAZING! She is making 'MMM' and 'Ahhhh' sounds. They explained that her brain and telling her to speak, but there is something interrupting the connection to her mouth. She can mimic the expression needed and the coordination needed for the sound to come with it is delayed. She did say however, Gabriella's ability to use the movement and noise together after a few tries is a great sign! She put her "mmm" and "ahhh" together and it sounded so much like 'mom' I could hardly contain myself! The other part of speech that was awesome was she FINALLY ate! Some macaroni and cheese and applesauce! Praise God!

We did some more OT and PT also, and she is gaining strength in her arm as the day goes on! I can only attempt to guess she will be using it in mass amounts a week from today!!!!!!!

Tonight, she had daddy hard at work making beaded bracelets for everyone. She hasn't slept hardly at all.... only enough to rest her body between therapies. We are going to start utilizing the playroom and craft times, also, when we can get used to this schedule.

I am so excited for today's progress.... we have a roommate and she is a precious little girl. Gabriella has already given her a flower for her bed and a bracelet, my little giver. We got out her LAST IV line and she is proud to show it's all gone. HER meds are dwindling down, and her spirits are rising. I only thank God and the amazing abilities he put in the people we met today that helped give her hope.

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