This is her pouty face



Christmas this year was a lot different than last year. Alyvia had C-Diff really bad and she was really agitated. She wasn't into opening presents at all. So we saved most of them and opened them when she felt better. She still has her good days and her bad days and Christmas was one of her not so good days.

Just playing

Gratitude

Alyvia is doing pretty good! She is crawling and scooting all over and trying to walk. She is just so much more like her old Livie self, I love it! She is so smart, she remembers so much from before all this, and that's comforting to me, I know that her brain is working right. Her mentality is what it was before, which even if it wasn't I would still love her to pieces, but it's nice to know that she isn't "slow," she is most definitely with it. She has made so much progress.
Livie does, however, have C-Diff...yuck! It's horrible, she's had such a hard time getting rid of it. (Which explains the fever she had a few days ago.)

Right now we are just getting ready for Christmas and enjoying the holidays. We have so much to be grateful for. Our baby girl is home, and she is going to be okay. That's the best blessing we could have.

I know that I have said Thank You, but I can't say it enough. Every one has been so giving and supportive, it has just been incredible. From doctors and nurses, friends and family, co-workers and complete strangers, I can't even begin to tell you how much the kindness and prayers mean to us, or how much it helped. THANK YOU.
And to God, He is the reason Alyvia is still here. I have learned so much through all this. I know that Heavenly Father really does want for us to be happy, even through trials. I don't understand why these bad things happen, but I know that Heavenly Father loves us, He especially loves his sweet, little children.

I am so thankful that I still have my Livie Bug, she teaches me so much and she never ceases to amaze me.

We hope that you all have a Merry Christmas!

I hate germs!!

We have been loving home life. We decided to put up a tree and lights, other wise it just wouldn't feel like Christmas. Alyvia is getting a lot better at moving and crawling, especially if it's something she really wants. Who would have thought I'd be so excited to see her demolish the Christmas tree and get into the presents underneath it!(; We've been home a week, and I think Livie is finally adjusting to her new environment.

Unfortunately, yesterday Livie was sick and had a fever all day. Her white cell count is a little elevated, so I am praying it doesn't turn into anything serious. (It is possible to get spinal meningitis twice...hopefully that does not happen.) We have been so careful with her, but her immune system is just so fragile. She hasn't had a fever today....so I hope she's okay. I am a super freak now about germs, I've been sanitizing everything, but Livie still seems to pick up the germs!

Other than yesterday Livie really has been doing better, her talking and speech are great, her vision is good, and some of the swelling in her face is going down. She still gets pretty agitated and fussy, some days its not as bad though. Hopefully yesterday's fever and elevated white cell count doesn't turn into a setback. I am hoping that Livie will be all better by Christmas. (:

She loves this horse!


It's so gOOd to be hOmE!


Jayden and Rachel, friends from the Trauma Unit

The going away party

Livie lovin the chocolate cake and ice cream at the party!


She wanted Gramma to "tickle" her (aka scratch her back, and her arms, and her legs...)

Home Life

It sure has been nice to be home. Even though we can't have visitors, it has still been good. Livie is doing really well in her own enviroment. She remembers most things. She still isn't walking, she starts therapy Tues. but today I got her to crawl by coaxing her with crackers. It worked like a charm! She is slow and its hard for her, but she did it. She even pulled herself up to the couch in standing position (because there was another cracker up there!)
Alyvia still gets really agitated, she can't handle a lot of stimulus. She is also really swollen from the steroids (thank goodness she is off of them now.) In time the agitation should get better and the swelling should go down.
Her vision is doing quite a bit better, I think she can see a lot more clear and a lot more often. She also passed her hearing test at the hospital. She will still have to have regular hearing checkups because she has the potential to lose her hearing during the next 6 mos (because of the spinal meningitis) but hopefully that doesn't happen.
Right now we are just enjoying being home! I actually just finished unpacking from the hospital (I thought we were going to have to rent a U-haul to take all our stuff home! haha)
Alyvia's lungs are getting better every day, she doesn't have a cough anymore and her C-Diff is finally getting better. Livie just needs time to heal, and then when she's all better we'll be able to see everyone that we can't see now.
**THANK YOU everyone for all the love and support** We couldn't have made it this far without it.

HOME!!

I am so happy....we are HOME!!! Alyvia finished her antibiotics yesterday and the doctors approved her to come home!! The only way we could come home was to have oxygen for Alyvia and a monitor/alarm system (pulse oximeter)to monitor her breathing when she is sleeping. It's kind of a pain, but worth it to be home! Alyvia was asleep when we got here, but when she woke up she smiled so big and said HOME!! It is sooo great to finally be here!
The nurses had a little going away party for Alyvia, with chocolate cake and everything. We are going to miss our nurses...they were awesome. After almost 3 months of being at the hospital you would think I would be running out of there, but it was actually kind of sad saying good bye to everyone. We met so many amazing people. Livie had some great doctors, especially her neurosurgeon Dr. Kestle, he was so optimistic through all of this. Then the nurses...they are amazing at what they do, they took such great care of Alyvia. We are really going to miss them.

We are also going to miss the other awesome families we met at the hospital. I can't even describe to you the bond that we had with each other. We laughed and cried together. They were an awesome support to us.

We are home, but unfortunately we can't go out. Livie can't leave at all. (She is pretty much still on isolation!!) She is still contagious, but more importantly her lungs are really weak right now. Her immune system is down (if it even exists anymore! lol) She is weak and really prone to getting a bug or virus, which could be life threatening to her. Sadly, we are going to miss all the Christmas festivities and parties. ): But I gues it'll be okay because I have my baby home!!

wOo HoO!!

Alyvia is doing fantastic!! Her antibiotics for the spinal meningitis end tomorrow, so that means no more IV's!! (It took IV team 4 pokes to get her last IV in because her veins are so bad!) Her C-Diff is finally clearing up, and the Influenza isn't settling in her lungs....so Livie really is doing great. Her vision is also getting quite a bit better. She is so much more like her old little self, just in the things she says and does. It's been awesome to see her like
this. (:
The doctors are even talking about letting us go home this week!! IF all goes well. We are still concerned about Livie's breathing (or lack thereof!) I know CPR and I know how to use a bag and mask (which we'll be taking home with us) but hopefully I won't have to use it on Alyvia. Right now the doctors and nurses are working on a care plan that we can do at home, I am just so excited to think we might be able to go home!!

PreCious GirL

Yes, Alyvia does indeed have 2 chins!!

These past couple of days have been the best we've ever had here. Alyvia is still not 100% her self, but she is coming along great. Every day she is more and more like her old self. She is still on precautions because she still has C-Diff and Influenza, but the Influenza hasn't gotten any worse, so I think it is running it's course. It's just been so great to see Alyvia more like herself...even if it is 10 pounds bigger!! (;

hAppY dAy

Today has been a good day!! Alyvia's cough isn't bad, it's there, but as of right now it hasn't affected her lungs. So hopefully the Influenza will just run its course and be gone in a few days. Livie still has C-Diff pretty bad though. Whenever I change her diaper she just bleeds, its so sad.
Alyvia is talking and responding really well, today has been awesome!! She still gets agitated, and she can't see all the time, but sometimes she does see. Her vision still comes and goes. Today, though, when I would talk to her she would actually look into my eyes (for the first time in a long time) and talk back to me. Just something as little as that made my day.

Through all of this, Alyvia's brain does have damage from all the trauma. We didn't know how much of this would affect our Livie Bug, but she is definitely "in there" and she still has her cute little personality. She still has her agitated moments and crying spells, but she is doing so much better. She still can't crawl or walk yet, but she is a champ at sitting up. She is getting stronger and stronger. She responds now when I talk to her (not all the time, but most the time) and she loves singing. We still sing all the time. Livie still knows all the old songs she used to, and she has learned quite a few new ones. She has gotten to be quite the chatterbox. She has also gotten to be quite the eater....she has definitely put on some weight, she has got quite the chubby cheeks now!! A lot of it is from the steroids she has been on though. She's got the "steroid look" now, where she is bloated and swollen (especially in her face and tummy.) Good thing she is only 2 and can pull off those chubby little cheeks!! ;)
I know that I won't be taking home the same little girl I brought here, but at least I will get to take her home, as we have seen here, not all the children are fortunate enough to make it home. We are so grateful that Alyvia is doing as well as she is.

Influenza

Alyvia's cultures came back, her throat culture showed that she has Para Influenza. She hasn't had a fever, but the cold has moved to her chest and this morning she has a cough. Influenza is a virus (so it can't be treated with antibiotics, it just has to run its course.) The cough is in her lungs, but its a loose cough. Our biggest concern is this could settle in her lungs and cause viral pneumonia, so hopefully that won't happen.
The doctors are also still trying to figure out why Livie stops breathing. She is on some new medications to see if that will help. She is still on oxygen at night time and nap time. So right now we just have to wait for the influenza to run its course, and try to get this breathing thing under control....so we're going to be here for a while longer. And by then Alyvia should be good to go and we can go home and have Christmas!! (Well, that last part is MY plan anyways!! :)

A new day

Today has been a better day. Alyvia had a better night. She didn't code...so that's always nice. haha! She had a CT scan yesterday, and it looked great, there's no infection in her brain and the ventricles in her brain are not full of fluid anymore...so no more swelling in her brain!! (So she definitely won't be needing a shunt, which is so great!)
Her cultures are still pending, but so far nothing major has shown up. Her fever comes and goes, but it isn't as high. So I guess we'll keep waiting to see what the cultures show.
Alyvia's IV went bad last night (but it had lasted 3 days) and they found another vein...so we are in luck for now!

Watching some Dora

Livie got to sit up like a "big girl" and eat her toast

Our favorite NTU nurse, Brigitte and my sisters

Watching some more Dora

Daddy and Alyvia

Infection

Livie had a really bad night last night. She coded (stopped breathing) this morning, they had to bag her (with the bag and mask.) She is on oxygen right now and she still can't keep her SATs up. She has had a continuous fever, she just can't seem to break it. Her white cell count is elevated (indicating an infection somewhere) we still don't know where. Alyvia had a chest X-ray last night and she does have a little bit of fluid in one of her lungs. So hopefully whatever she has doesn't go to her lungs. Her lungs are still really weak.
Right now, Livie has quite a few doctors working with her trying to figure out whats going on. She has had her blood, urine, and the back of her throat cultured, we are waiting for those results. Today Alyvia will have another CT scan to make sure there isn't anything going on in her brain that we need to be worried about.