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.

Have to take the good with the bad

Alyvia had a great night last night, she was talking really well and we were singing nursery rhymes together, and she would kiss me and tell me that she loves me. It was great. (: I really miss those fun times we had together, its crazy how much I took those moments for granted.
Through the night Livie didn't de-sat, (her oxygen didn't get low) so thats good. She does use blow by at night. She would NOT do the oxygen through the nose, so the doctor decided we could just use blow by at night and nap times instead of the nasal cannula. I think that was probably a good decision on his part, considering Livie is 2 and the only thing she'll put in her nose is her fingers!

Last night was awesome, but today Alyvia has been really agitated and her heart rate has been really high. She also has a fever. Which the doctor is trying to figure out why, becasue Livie is on some heavy duty antibiotics....she shouldn't have an infection anywhere. So Livie will have some lab work done to see if they can find a reason for the fever....

Faith

Today was going along great, the doctors had discussed us maybe even going home in a few days if all went well....then Alyvia stopped breathing, she turned BLUE and we couldn't get her to take a breath, it only lasted a minute, but was was still really scary. We gave her oxygen and she still wouldn't breathe, thank goodness we finally got her to take a breath. Its just so surreal when she does this, it is getting worse...and this time she was shaking, so the doctors think that myabe she was seizing. No one really knows why she does this.
When Livie had the sleep study done the EEG showed that she does have the conditions of seizure activity in her brain (which means she has a higher risk of seizing.) The seizure meds were being weaned, but now she will have to go back up on the dosage.
The doctors also think Alyvia's brain is not telling her body to breathe, hopefully as her brain heals this won't be a problem anymore. It just makes me feel really uneasy because Livie randomly does this, and each time it seems to be getting worse. It lasts longer and its harder for her to start breathing again. I am really worried she will do this when she is asleep....(especially since none of her monitors went off when she did this, which also confused the doctors.)
She has made it this far. This is one of those times where I just have to have faith. Through all of this nothing has ever tested my faith so much, but at the same time nothing has ever strengthened my faith so much. I have learned to put all my faith and trust in the Lord, and know that no matter what happens it will be okay. And sometimes that's hard to do. I have no control over these situations, no one does. It is hard to see my little girl go through these things, and sometimes I wonder why, but I know everything happens for a reason. Even if it is making my hair turn grey!
Thank you everyone for all the support and for all the prayers being offered up for sweet little Livie.

Miracles

"There must be a God afer all, because this is really a miracle...." this is quoted from Alyvia's nuerosurgeons after they examined her and realized that she doesn't need a lumbar drain put back in or a shunt put it, which was previously planned.
So yes, there is a God, and yes, miracles really do happen. Alyvia's brain seems to be healing on its own, without any help, which really is a miracle! Right now, she doesn't need a drain or a shunt, which none of the nuerosurgeons understand, she should need help regulating her spinal fluid, these things don't just fix themselves....but that seems to be the case for Alyvia.

Also, yesterday Livie could see, I mean really SEE, I knew her eyes were working because she just kept looking all around in awe, she was so focused and I knew she was really seeing. Unfortunately, she still can't see all the time, it comes and goes, but I have faith that her vision will return. I am just so glad that she can see sometimes, it will come in time. (They said 75% of the time the vision will return, but to give it one year for the brain to heal.)

Livie had a sleep study done and we finally got the results back, she does have sleep apnea. Her brain isn't telling her body to breath, which is why she de-sats (her oxygen drops) when she is relaxed or sleeping. So from now on Livie will have to be on oxygen at night and when she naps. She has been using blow by, but now she will have to sleep with nasal cannula oxygen...I don't know how she is going to like that up her nose!

So far IV team has been able to find veins to poke...so hopefully her veins will last until she is done with antibiotcs, we have 15 days left. Her spinal meningitis culture still isn't growing anything, which is great, she doesn't have any other bacteria growing.

Livie still has C-Diff, she is having a hard time getting rid of it because she is on so many heavy duty antibiotics.
Overall, Alyvia's body is healing and slowly getting better. She has come a long way, and I know she still has a long way to go, but I am so thankful for all the baby steps and big steps she has made. I am so grateful she is here and doing as well as she is doing.

Address

Alyvia is doing about the same today. No big changes on anything. Today I decorated her room with Christmas lights and garland ....its not the same as home, but its a little more festive now (:

Also, I've had a few people ask what the mailing address is here (sorry it took me so long.) It is:

Primary Childrens Medical Center
attn: Alyvia Hansen
100 North Medical Drive
Salt Lake City, UT 84113-1100

My little angel, I love her chubby cheeks!

Livie adores her Grandpa, Papa Joe

She was still dancing and shakin it!

Blessings

She sat up all by herself for the first time...and started dancing!

Look at those chubby little cheeks!!

She LOVES food!

Alyvia and Granny Goose

Livie Bug is still sick, but she hasn't had a fever, she is talking more, and her spinal fluid tested negative!! Yay!! The bacteria (gram negative pseudomenos) that was infecting her spinal fluid is now dead, but it can easily come back, which is why she has to be on antibiotics for so long. She still has C-Diff in her tummy, which she is having a hard time getting rid of, but it seems like she is slowly getting better every day. Also, the spinal fluid build up that was on the back of her head (outside of the skull) has gone down....which is awesome! We don't know what the ventricles inside her brain look like right now, but we are praying the fluid is going down in there as well, which would be a miracle without a drain put in, but we have seen a few miracles happen since we've been here!

Our Thanksgiving was nice, we had family come and it was really great to see them. We have so much to be thankful for, we've had amazing support since we have been here from so, so many people. I can't even begin to tell you all how much it means to us. Thank you for thinking about our sweet little angel. A special thanks to everyone at NRF, your kindness and support has been incredible, thank you so much.

Happy Day

Today was a pretty good day!! Livie had the spinal tap and it went well, the nurse went to sedate her...but her IV was bad!! So they couldn't sedate her, however they went ahead with the procedure and she held perfectly still, she didn't even scream. She did so good! We started the 21 day anitbiotic count down today. (:
She was talking a lot more today. She is still not talking as well as she had been, but she is doing a lot better than yesterday, and she LAUGHED!! A good, loud laugh!! It was awesome, I love to see her smile. She also sat up in bed today, all by herself! She is getting stronger and stronger.
She still has C-Diff (stomach bacteria) really bad, her heart rate has been over 200 beats a minute (it should be 80-120) so she's been in quite a bit of pain, but we found a medication that seems to help her.
I have so much to be thankful for, the Lord is very aware of Alyvia and her needs and has blessed us in many ways.

Spinal tap

Livie is sicker today, they think she might have a UTI too. Poor little girl has got to be in quite some pain, she can't have heavy painkillers though, they're afraid it'll sedate her too much and make her stop breathing.
Tomorrow Alyvia is going to have a spinal tap, I am a little nervous because she'll have to be sedated for that....and she does NOT do well with sedation. They are doing the spinal tap to test her spinal fluid to see how strong the bacteria is (hopefully its gone!!) If it is gone then Livie can finally start the 21 day antibiotic countdown. We get to hold off yet another day on putting the lumbar drain back in, however if Livie doesn't start acting like she's feeling better then neurosurg will have to put the drain in anyway (we don't know what the swelling in her brain is doing to her because she has so many other things going on inside her body) Right now its so hard to tell whats causing her the most pain....C-Diff (tummy bacteria) or Spinal Meningits or the swelling in her brain....she hasn't been very responsive the past couple of days, she doesn't talk much now, she mostly just cries....a lot. Not that I blame her. So hopefully she can feel better soon. I hate seeing her in so much pain.
I found out today that the kind of Spinal Meningitis Alyvia has causes hearing loss 1 out of 10 kids....yikes!! However, Livie's answered my questions a few times and repeated me, so she can hear me...phew!! (:

A bit better

Today was a little better than yesterday. Livie is still pretty sick, but she acts like she is starting to feel a tiny bit better. She has her appetite back....and is pushing 22 pounds now!! She's gained almost 5 lbs!! She needed it, now she has the chubbiest little cheeks!!

She had another CT scan today, the spinal fluid inside her ventricles isn't any more than on Friday...so thats really good, as of right now there is pressure in her brain, but not TOO much, we can hold off a day on putting the lumbar drain back in.
Oh, and Alyvia's eye exam went well, her optic nerves are not damaged, but her reaction time was slow (which is common after brain trauma) so hopefully within a year she will get her sight
back.
We did have a scare today, though. Livie stopped breathing (still no one knows why she does this) and she wouldn't/couldn't take a breath, even with oxygen. So the nurse had to call a code blue and just when they got ready to bag her, she started breathing. I was so scared, its so unreal seeing something like that happen in real life, let alone to your own child. No wonder my hair is coming in grey in places. Seriously, it is. Good thing for hair dye.

Well, I decided that we were going to wait until Alyvia absolutely had no more veins left (even with using an ultrasound to find them) until she has to have a PIC line put in. But then her IV went bad...however they miraculously found a vein, they even got it on the first poke!! (:

Decisions

Livie is still pretty sick, the stomach bug she has is C-Diff, which is really painful, and the bacteria that caused her Spinal Meningitis is the worst kind, meaning it has the worst side effects (higher rate of brain damage and death) so she has to be on heavy dose of anitbiotics for a long time. Since Alyvia has to be on anitbiotics for so long she needs IV access to put them in...which is a problem because all her veins are bad (they're ruined...from being poked way too many times, sad huh.) So she can't have any more IV's, but she can't have PIC lines (central lines) in either. For some reason whenever she has a central line it clots. She already got 2 blood clots that we know of from having a line in. She can't be on blood thinners for the clots because she has to have the lumbar drain put back in....so we have to decide what to do. Is it worth the risk of another blood clot? We have to decide.

SMILES!!

For her first outing...she got to go for a ride in the wagon, it put her to sleep!!

Visitors (:

Alyvia sitting up for the first time by herself....we had to coax her with Doritos!!

A glimmer

Livie singing nursery rhymes and playing peek-a-boo.

Today was a little better, we had some great visitors, so that was nice. (: Alyvia is still sick, but she only has a low temp so hopefully the antibiotics have kicked in and are fighting the Meningitis.

She had a CT today and the spinal fluid in her ventricles isn't too much yet, thank goodness (: so we still have a little time until she has to have another drain put in. Neurosurg does not want to put the drain in until they absolutely have to because the type of spinal infection that Livie has is the worst kind, it sticks to plastic (which is what the lumbar drain is made out of.....so she wouldn't be able to get rid of the Spinal Meningitis.)

Today she "tooted" and started to giggle. It was soo good to hear her laugh! I have missed it.
Some bad news.... she has a bacterial infection in her stomach because of all the antibiotics she has been given, ironically enough to get rid of the infection they give her more antibiotics!

A sad day

We have hit a bump in the road, Alyvia's spinal fluid was tested and it came back positive....she does have Spinal Meningitis (where the spinal fluid gets infected and infects the membranes surrounding the brain) which is really frustrating. She is really sick, she has to be on anitbiotics for 21 days and the nuerosurgeon will NOT operate on her to put a shunt in until she is off antibiotics....so we are going to be here another month. Meanwhile, her spinal fluid is still not circulating right and its putting pressure on her brain, and pressure on the opening where the lumbar drain was inserted into her spine. So she is getting re-sutured for the 3rd time to try and stop the fluid from leaking. At some point she is going to have to have some sort of drain put in her brain (EVD) or her spine again (possibly another lumbar drain) to relieve the pressure building up, but right now she is too sick, so we are waiting and praying that the pressure in her brain isn't too much, and that she doesn't get any sicker.

Also, another one of Alyvia's PICU buddies, another amazing family we got to know, lost their baby boy. They too have been here for quite some time while baby Noah fought hard to live. Noah was such a sweet little baby. Its so sad being here and seeing these innocent, little children so sick, and then seeing these great families have to go through such things. Thats got to be one of the hardest thing to ever have to go through. We are going to miss you NOAH!!

Life is so precious, I am so grateful for every day I get with my sweet little girl. I always knew from day one that she was special. I really do feel lucky that I get to be her mom. She has taught me so many things. Before I became a mother, I never knew I could love THAT much. Alyvia amazes me every day, she is only 2, but she is so strong and she has such a sweet little spirit. I have to have faith that she will keep fighting to get better so that we can eventually go home....together.

Update

Alyvia had a pretty bad night, she's been really sick, she had a really high temp that we can't get down, her heart rate is way too fast (she keeps setting off the alarms) and her lumbar drain leaked all night. They had to take the lumbar drain out this morning because when it is leaking spinal fluid out then you know germs can get in. Which right now is our main concern, because of the high fever the doctors think Alyvia has an infection and the most likely cause of infection would be in her spinal fluid (from having the lumbar drain in.) If her spinal fluid is infected then the infection can go to the brain.....which would be very bad. So now that the lumbar drain is out, we know Livie can't circulate the spinal fluid on her own, so meanwhile its putting pressure on her brain, which needs to be relieved soon, but the nuerosurgeon can NOT operate on Livie with an infection....so I don't now what is going to happen.

Quite a day

Alyvia had an MRI, CAT scan and an ultrasound this morning....the MRI didn't go so well. Livie does not handle sedation very well (since the MRI is at least 45 mins in an enclosed capsule where you aren't supposed to move a muscle....Livie would definitely need sedation!) She was sedated, and like normal, didn't fall asleep, so they gave her as much sedation as they could and started the MRI and then she stopped breathing, (and alomost gave me a heart attack!) so they put her on oxygen, and she was very upset...needless to say she is going to have to have another MRI done, and it'll have to be done with general anesthesia.

According to the CAT scan Alyvia has more fluid in the ventricles in her brain, and on the outside of her brain, (her lumbar drain was clamped all night long to see how she would handle the spinal fluid on her own) and then today her spinal fluid started leaking out of the lumbar drain, which isn't good. Apparently there was too much pressure for her to handle, so I am pretty sure she will be getting a shunt.

The ultrasound couldn't even find the vein where the clot was....so we don't know too much about that. Most likely the clot is still there since it was big, but hopefully now it is smaller.

Livie has had quite a day. The doctors think there must be a lot of pressure in her head from all the fluid because she won't talk much today and she won't eat (which is her new favorite past time) she has a fever and she's been screaming telling me her head hurts. I imagine she must have quite a head ache! So now we are just waiting to talk to the nuerosurgeon to see what the plan is.
The eye exam is on hold for tomorrow since today has been kind of crazy.

The Brain is still healing

Livie Bug and her dad after surgery

Daddy & Alyvia snoozing at the Hospital together

Livie still has the lumbar drain in, her neurosurgeon is out of town so we are waiting for him to come back and decide what needs to be done. Everyone else is saying that Alyvia will need a shunt put in her brain because her CAT scan showed that she still has a lot of fluid in the ventricles in her brain, I have felt really good about everything though, so I don't know if a shunt is what needs to be done, shunts have such a risk of infection and getting clogged.....

Also, Alyvia is going to have an opthamology exam because she does not seem to be tracking and seeing. Sometimes it seems like she can see, but whenever we hold objects in front of her, she can't see them. Because the tumor was in her brain stem (one of the worst places because the brain stem controls so many different functions) her vision might be permanently damaged. I am hopeful though because she's already amazed the doctors with her progress.

She has an MRI and another ultrasound scheduled for tomorrow so I will keep you all posted on those results.

Lumbar drain trial

Alyvia's Happy Face

Alyvia's Mad Face

Alyvia is doing great!! She is talking so much, she is forming her sentences better and she has quite the opinion on whatever she can talk about! I feel like I have my Livie Bug back. (: We also get to hold her 3 times a day now (they have to clamp the lumbar drain off and they can only clamp it for 30 min 3 times a day) Its been so nice to be able to hold her and rock her.

She is getting stronger and stronger every day, I can't wait for her to start physical therapy. Now that she is more responsive and aware of her surroundings she is getting pretty sick of laying in bed all day.

Today was Livie's lumbar drain trial, it was slowly raised throughout the day, this will tell us whether or not her spinal fluid is absorbing and circulating like it should....and so far it hasn't had a whole lot of drainage, so thats good! Hopefully this means her head is healing and there won't be anymore spinal fluid leakage XXXXXX (that means I am keeping my fingers crossed!)

We have really enjoyed the visitors, phone calls, messages and packages we've gotten, thank you!! (-:

Chatter Box

Real Food for the first time in Almost 7 weeks...

Alyvia started talking!! She slurs some of her words, and sometimes she mixes them up....but she is definately talking! She jabbers all the time now, I think she just likes to hear herself talk. Its amazing how much has come back to her, she remembers names, colors, animals and of course her favorite food...chicken nuggs with ranch and fry sauce, so thats what she got to eat for lunch today. She LOVED it! Her feeding tube was also taken out since she is eating so well and she was weighed today.....she has finally broken 20 pounds for the first time ever!! Livie was SO skinny after coming out of the PICU, but now she has a huge appetite and can eat and hasn't thrown up once! Thats got to be so nice for her. Her cheeks are so chubby, I love it, she finally looks healthy (and then some!) Her brain is definately trying to heal. Alyvia's eyes still aren't working all the time, she started crying and said "I can't see, I can't see!" and sometimes she wants us to "turn the light on" when its day light, so hopefully that keeps getting better too. She has made a lot of progress the past couple days, she even smiled for the first time and said " I love you momma" it was the greatest thing ever!

Hope

Check out Alyvia's scar!!

I had been so discouraged the past few days, the doctors kept saying they didn't know if Alyvia would get better and she was having such a hard time with everything. It was so hard knowing that I had this perfect, smart little girl that now looked at me like I was a stranger and was in her own little world that I couldn't bring her out of. After everything little Livie has been through I kept thinking she can't stay like this, she HAS to get better. Then Alyvia fell out of her bed....the nurse had the side rail down and walked out to the hall to get something and somehow Livie fell head first to the floor (We had just locked her bed into place on the tallest setting so Livie's lumbar drain would drain more) So it was quite a fall, she had to have a CAT scan to make sure her head wasn't fractured and her brain wasn't bleeding. It was a rough day. Thank goodness the CAT scan looked good. I finally decided that maybe during the fall Alyvia knocked something back into place in her head.... I have to have more faith that everything will work out alright.

Today has been an amazing day. My little Bug has made a lot of progress, she is trying so hard to talk, the words aren't very clear and she struggles, but she is trying! And she is saying all of the animal noises, I'll ask her what a kitty says and she'll say "Meow," she does it with every animal!! She also started blowing kisses and she's figured out how to nod her head to say yes. She is trying so hard to communicate with us and gets really frustrated when she can't so I still sing to her a lot, its the only thing that seems to comfort her. After today I know that Alyvia can do it, I am going to hang on to this great day because I know we have more rough days to come, but we can do it.

I want to say THANK YOU to everyone who has been thinking of us and praying for little Livie Bug. It is amazing the support we have gotten from so many people; friends, family and people I haven't even met. People have been so giving to us, it means the world to know that people care so much. Thank you!!

Another Day

Livie Jo and her Grandma

I can't believe we've been here 44 days!! I am actually starting to get a little homesick, but I am not going home without Alyvia. She is still making daily progress, she put a french fry in her mouth, which doesn't seem like much, but it was really hard for her to do. She also said a few words today: mommy, sick and beep-beep-beep. She still gets really agitated and the only thing that sometimes calms here down is when I sing to her....so the lucky nurses have to listen to me sing all the time!! haha! Livie's lumbar drain is still working....the next step will be to see if her brain/spine is making and using the spinal fluid as its supposed to or if she will need a brain shunt to regulate it.

Life is so precious

Hospital Friends

Livie is doing alright today, she had a bad morning, but then had a better afternoon. Her CT scan looks the same....they still don't know why she has a build up of spinal fluid in her brain, and they don't know if the lumbar drain is really helping it.....guess we'll wait and see. The ultrasound didn't pick up her blood clots though, so hopefully the clots are gone or really small. There is so much unknown right now with the things going on in Livie's brain. Cerebellar Mutism is rare and the brain is so complex. Alyvia said a few words today, she said "I need you" to me, and it made my day. She does remember me!! I also got to hold her for 5 minutes and she snuggled with me, so that was nice. (: (Alyvia is not usually supposed to be held or moved with the lumbar drain in)

We do miss our friends from the P ICU, we met some incredible families in there. Its amazing how much we bonded with each other, we worry with each other, cry with each other and laugh with each other. We especially miss the Pearson family, little Ian has touched my heart forever and I think of him often. Life is so precious, you just never know when your time is up.

Alyvia's diagnosis

1st Time Sitting Up in Weeks

Today the neurosurgeons figured out whats wrong with Alyvia. She has Posteriour Fossa Syndrome (PFS) or sometimes called Cerebellar Mutism. (I am working really hard on my medical terminology!!) Basically, her brain cannot funcion like normal and is having a hard time sending the signals to her nerves, so she doesn't have control over her body, such as muscle control, she cannot talk or smile, and sometimes she can't see things. She isn't blind, but her brain is not sending the signals to her eyes that there is something in front of her. People with this condition are extremely neurologically agitated and NOTHING will calm them down. Sometimes the freak-outs last for 5 mins and sometimes it lasts for hours....it is very frustrating to know that there's nothing I can do to help her. This is just something she has to go through until her brain heals. This is not a common condition, but sometimes it happens to patients that have had surgery in the brain stem or cerebellum. Livie's brain will take an average of 6-12 mos to heal. Some people never fully recover. The brain is so fragile. I have faith that Alyvia will come around, she is already making small baby steps. She seemed fine after brain surgery, but a lot of times this condition takes 48 hrs to manifest itself. (And by then Livie was in the P ICU on life support)

Health wise Livie is doing good, she had a CT to check her spinal fluid and an ultrasound to check the blood clots, we still haven't gotten the results back so I will keep you all posted.

Neurolgically Livie has quite a ways to go....good thing she is such a strong little fighter. (:

A better day

The swelling (air was in all of her tissues from the leak in her lungs)is finally going down. Check out the bruise...one of the blood transfusions didn't go so well.




Alyvia was moved from the P ICU to the Nuero trauma unit floor. ( NTU) Her lumbar drain still seems to be working pretty well, its not leaking so thats a good sign. She is draining quite a bit of spinal fluid, so hopefully she won't have any more pressure in her brain. She is trying really hard to talk, but just can't seem to get the words out, however she did say NO again. (One of her favorite words!) Today she seems even a little better than yesterday. (:

Another day in the P ICU

Alyvia is still in the P ICU, she has the lumbar drain in, it is getting rid of the extra spinal fluid she had in her head, so now hopefully she won't have any pressure on her brain. The drain started to leak though, so the re-sutured it in place and hopefully it won't leak anymore or Livie will most likely have to get a shunt put in her brain. She hasn't stopped breathing for 2 days, so thats a plus!! (They think it had to do with the pressure on her brain or a narcotic reaction....) We've been able to feed Livie and she just loves it!! She has also gained some weight!! (:
(She got REALLY skinny from being so sick)
She also tried to talk today, she said NO, and the nurse last night swears Livie was trying to say Mommy. She still hasn't smiled, and sometimes when her eyes are open she just seems so far away. But she is in there, hopefully her brain can heal and she can be Alyvia again. I am really missing her cute little personality, but I really do think she will come around....

Lumbar Drain

Halloween's half naked fairy!!!Well..... Alyvia was moved out of the P ICU to the floor for a couple of days, but then she stopped breathing a few times (she scared the crap out of me!!!) so they moved her back to the P ICU. She is doing better, the Dr's still don't know why she stopped breathing in the first place, or what caused it, but today she is doing well breathing wise. Her brain still has spinal fluid building up though, and she has quite a big bump on the back of her head and she still has quite a bit of fluid building up inside her head which is causing swelling in her brain, so Livie will need a lumbar drain put in. The drain goes through the spine up to the brain to relieve the pressure, meanwhile they have to really control how much fluid drains and how much stays or it can cause brain damage. So I am a little nervous.
On a happier note....Livie passed her swallow test!!! YAY!! So I got to feed her actual food today, she LOVED it!!

And they really went all out in the PICU for Halloween, they got Alyvia a costume to wear and took her picture in it then they went trick or treating for her and brought her back a bag of candy. Child Life really goes out of their way to help make the holidays special for the kids.