MRI

Since we stayed with my sister Ashely, we got to use her pool too. Livie loves her aunt Ashley, almost as much as she loved the pool! Haha! (just teasin sis!)

After my last post saying how healthy Livie has been....She got a cold!! Nothing too terrible, but it still left her with a cough and wheezier lungs.

Needless to say Livie was not able to have her MRI. We went down to Utah and stayed with my sister. The next morning we got up really early and went to the hospital. We got all checked in and waited and waited until Livie was finally ready to go see the anesthesiologist....thats when he broke the news and said "That because of Alyvia's medical history, he did not feel comfortable performing the procedure." Since Alyvia was not in her best medical condition the Dr didn't feel good about her having the sedation for the MRI, especially where Livie is not a good candidate at all for any kind of sedation. I had been a little worried about that with her cold, I'd even called Primary's, but they said to still bring her down. So it's kind of a bummer we'll have to do it all over again in a couple weeks, but that's okay, because if the anesthesiologist didn't feel good about it, then I'm going with his opinion. I am glad that they can respect how sick Livie was and know that she likes to keep everyone on their toes with some of the tricks she pulls!

The trip wasn't a complete waste though, we stopped in the PICU and got to see a couple of our favorite nurses!! They all happened to be working that same day. Which made our day! I am so glad that they got to see Livie now, since they'd only seen her at her sickest. (I didn't even think to bring a camera though and get pics, dang it!) We had some of the best nurses EVER and I am still grateful for how incredible they were! We love Primary's PICU nurses!!! They are GREAT!

We had to re-schedule the rest of Livie's appointments she had that day since they all go off what the MRI says....so we'll be going back down in 3 weeks, hopefully then she'll be nice and healthy. (Well, healthy for Livie!)


THEN...
The highlight of our trip...while we were in Utah, I got to finally meet my little HERO, Charlie Cooper!! A lot of you know about him from my blog, for those of you who don't, Charlie and Alyvia have both been through similar brain trauma. It was such a neat experience to finally meet the little boy who has touched my life and my heart so much. Charlie is such a handsome little guy with the most beautiful blue eyes. It was so great to finally meet Charlie and his amazing family. I have to much love and admiration for them.


Livie chatting it up with Rob (She made herself right at home!)
Finally meeting my cute little hero!


Precious

Thanks again for letting us stop by!! You made our day!!

Elder Logan Phillips

My little, big brother


Livie and her uncle Logie

Some of the fam

I am really proud of my little brother, Logan. He just left for his mission. He will be serving in the Cuernevaca, Mexico mission. He left for the MTC on Wed. Logan had his farewell combined with his cousin's welcome who just returned from serving a mission. It was really great to see everyone there.
I'm not gonna lie....I already miss the little punk!!

Little Miss Sass!!

Update

I have been a really bad blogger lately....
So here's a little update on Livie.

She really has been doing well. This is the longest time she's gone without being sick --knock on wood!! It just seems like during the winter time she always had some cold or bug!! Yuck!
Her lungs seem like they are doing better, they aren't as wheezy. She still does her breathing treatments and it really helps.

She does, though, still have her good days and her bad days. Some days are really hard because she just cries and cries. She is inconsolable. This is common with brain trauma. It's going to take time, the brain is still healing. When she has a really bad day and I'm really frustrated I just have to remember how sick she was and just how lucky I am that she is still here.

In a few days Alyvia has some appointments at Primary's and an MRI to make sure the tumor isn't growing back. I am a little nervous about the MRI, Livie does not sedate well, so once again it'll be done under GA. Which is better than her stopping breathing in the middle of the MRI, but I still hate that fact that she'll have to be intubated. I know she's going to have to have MRI's for the rest of her life....but I still get so nervous about them.

Other than that, we've just been keeping busy with life and waiting for summer time to finally show up around here!! (;


Livie went fishing for the first time with her dad. She loved it!! She even had her own Dora fishing pole!!


She's got something
She reeled it in...(or maybe she just backed up until the fish was on the grass!!)

Yay! She did it!!

Alyvia got a kitchen set for her birthday!! She loves playing with it. I highly reccomend this for toddlers...it keeps Livie entertained for hours!! (;

Trailing Sheep

We went with my dad to trail sheep. Alyvia LOVED it! She is turning into a little farm girl. (Those are the best ones, right!! hehe!)
Even though it was raining, we had a fun time. Alyvia got to ride a horse and thought it was the greatest thing ever, she did not want to get off.

Livie and Aunt Shayla

The boys working on the four wheeler

We were laughing pretty hard about something!!

Here come the sheep

Me, my cousin Marisa, and my sister Shayla

Giddy Up!!

Farm chores

Helping Shayla feed calves (and maybe playing around a little bit too!!)

Livie has finally gotten over this round of C-Diff! (Thanks for all the advice, Livie's been on a couple pro-bacteria's since we've been home from the hospital, but it doesn't seem to be enough at times...)

Sorry for slacking on updating the blog, we've been crazy busy lately.

As you can see from these pics, Livie has been loving helping out with the farm chores!!

Getting the bottles ready for the baby calves
Loading up the pickup

Livie found the baby kitties, she loved them!


If you look closely, you will see that Alyvia is not the only one with a love for rubber rain boots!!

Farming

Alyvia's been going with her Grandpa Joe do some spring plowing. She loves riding in the tractor and begs to go every day!!

Happy Birthday Alyvia!!

It's official....my baby is three!!

Where has the time gone!?!

This past year has been quite an unbelievable year, we take the good with the bad, but are glad this past year is behind us. (;

Alyvia's birthday was on May 2. Because she's had C-Diff so bad, we had a low key birthday with family for her, but are planning on going to Utah soon to do some more celebrating down there!!

Love Her!!

Since it was her birthday, we let her ride Pumba at Toys R Us (twice!!)


Opening some presents!!
A new, red Little Tikes CAR from Grandma!!

C-Diff

Just a little update: Alyvia is still fighting C-Diff, so she's been really fussy, but she hasn't had any more fevers (so hopefully this means no more febrile seizures!!)

Livie has had such a hard time kicking this crappy (haha, no pun intended!) C-Diff. Any advice for fighting it??

She is still getting the steroid through her breathing treatments, it must be working because her lungs and breathing have been a lot better. (:

We're just waiting for it to warm up around here so we can go outside and play!!


Yesterday the sun was finally out!!
Kassidee and Logan (check out Logan's eye, he got into a fight with a cow.)



Learning some trampoline tricks from Shayla

Livie and Grandma

Sorry, I have to vent....

I ususally try to keep this blog upbeat and positive....however, this post is going to be a bit of a venting session....
It all started yesterday....Livie had a fever all day, I couldn't get it to break. She had really bad stomach cramps and diarrhea, most likely her C-Diff was back. Yuck. She also stopped breathing 3 times already. She just kept crying and crying and her fever kept getting higher and higher. She finally fell asleep for a nap. She was asleep for a little while when I heard these strange noises coming from the bedroom. I went in to check on her.... Her eyes were open, but deviated to the left, her pupils were dialted. She was making weird gurgling noises and could not speak or move.
I kept telling her to look at me, to talk to me. She couldn't. (I am fighting panic at this point.)
I picked her up and held her. She still couldn't talk or move. Her eyes were still stuck and not tracking. I am starting to freak out now.
Thank goodness my phone was close by, I called the pediatrician, they said to get her to an emergency room immediately. Everyone was gone, but I was able to get ahold of my mom (who had just gotten off work.) She rushed over to my house to take us to the nearest hospital: Bingham Memorial hospital. Blackfoot's only hospital. (Definitely not my first choice, but Alyvia is still non responsive, and her coloring is starting to get worse, and I am getting really scared. I can't help but wonder if my little girl just had a stroke.)
Now for those who do not live here, I will tell you, BMH is not a favorite hospital to very many people. In fact, it's the town joke that if you are dying, not to go there because they will kill you off. (Harsh, but pretty true.) I was hesitant taking Livie there, but obviously this was an emergency and she needed help....
We get to the emergency room and Alyvia's eyes or no longer deviated to the left, they are looking straight ahead, but she is still not tracking and she is trying to talk, but the words just are not coming out right.
A man, dressed in regular clothing, takes our info and takes us back to the ER. (I guess he is the nurse) He then tries to weigh Alyvia in a baby scale. I am trying to give him a run down of Livie's medical history since it is quite extensive. Meanwhile, this nurse is having a hard time getting the weight. I tell him that we see the doctor on a regular basis. I know how much Alyvia weighs, does she really have to be weighed right that second? (I am a bit more concerned about whether or not she's had a stroke than how much she weighs.)
Mr. nurse than goes to get a thermometer to check Livie's temp. Oh, and it can only be a rectal temp. They can NOT do it any other way. (Seriously? That is the ONLY way. Does he not understand that she has got explosive C-Diff diarrhea and he should not be wanting to put anything down there!!) I ask him if he has to do it rectally....he HAS to. There is just no other way, and he cannot take my word for it that she's had a fever. He needs to know for himself. (Seriously? Are you kidding me? He can't listen to me, her mother, or feel the poor girl's forehead to see how hot she is?) More importantly, this nurse had not even looked at Livie to assess her. He hasn't tried to talk to her, look at her eyes to see if they're deviated or dilated, checked her breathing....NOTHING!
I am starting to get really concerned at this point, I don't know if Alyvia's had a stroke, if she's okay, and all this nurse wants to do is put a thermometer in her bum.

Whatever, I lay her down so Mr. amazing nurse can get Livie's temp. My mom warns him that Alyvia has a history of stopping breathing, turning blue and passing out. In the past she has needed oxygen to recover. (I am worried because her oxygen is only 80, shouldn't she be getting some oxygen anyways right now?)
Here is the real kicker: The nurse does not get any oxygen for Alyvia, INSTEAD he asked me why we are there.
WHAT!! HELLO! Why do you think I am there?! Then this great nurse proceeds to tell us that if Alyvia stops breathing it will actually be a "good thing." She can "reset her system" and it will actually "help her."
(Apparently he is not understanding all the brain trauma and medical issues Livie has had.)
Well, I picked my jaw up off the ground and told the nurse that I obviously came here to get help for my little girl, and if he could not offer that help, then we could go somewhere else.
And that is exactly what we did.
We left.
My mom is laughing at this absurdness of this whole thing, she could not believe how ridiculous the nurse was. (For a moment she thought we were on "Punk'd" and that Ashton Kutcher would come running out.) It was that messed up!

I am in tears, but at least Alyvia is trying to talk more and tracking with her eyes.
I call Livie's pediatrician and told him what happened. He says that Livie needs to be seen and that he would see her (even though it was after hours.)

Have I mentioned how much we love Alyvia's pediatrician. It's a drive to Pocatello, but it's worth it, he does so well with Alyvia and I trust his opinion.
By the time we got to Pocatello, Alyvia was acting a lot better (finally talking and tracking with her eyes, and sitting up.)
Verdict: Livie did not have a stroke (Phew!) The Pediatrician thinks that Alyvia has the stomach flu, and that because of the high temps she had a seizure while she was sleeping and had a hard time coming out of it. Because her oxygen was doing so well (a record setting 95) she didn't need to be hospitalized. However, if this happens again, Livie will most likely be put in the hospital to be monitored.
I have seen a lot, and as bad as it sounds, I am used to seeing Livie turn blue, stop breathing, even seizing. This episode just really scared me. It brought back all those memories of being in the hospital when Livie was like this and there was nothing we could do.

Because of all the brain trauma, Livie's brain isn't firing exactly right, but I am so thankful it's working as well as it is. I love this little girl more than life itself. (Even when she scares the crap out of me! ;)

I still cannot understand why we got such horrible service from the nurse at BMH. Especially since Alyvia has got such a crazy medical history. It's pretty sad that this nurse would act the way he did.
I do know that I will NEVER be going to BMH again.

I'm back!

Ashley and me


I'm back!! I went on a week long cruise with my sister. We had a great time, it was so nice to be in WARM weather! It was a really fun (and probably needed ;) vacation. I was really worried about leaving Alyvia (I have never left her and with everything that's happened I was worried how she'd do) She was in good hands, though, and she did great!
Now that I am home though, Livie is sick again! Bleh! She has C-Diff yet again (it is a constant battle with that C-Diff!) And she's had an ongoing fever, hopefully this is just from the C-Diff. So she's not feeling too hot, but her lungs sound great! She isn't wheezing and her oxygen is good.
I decided that I am just going to have to keep Livie indoors until it warms up around here (which could be a while!) She just seems to pick up every germ, I don't think her immune system is quite ready to be out and about yet.

Before I left, we had a nice, sunny day (pretty rare, I know!) So we took advantage of it and Livie played on her trampoline. She absolutely loved it! I couldn't get her to come back in the house, we even had to eat lunch on the tramp. She was a little hesitant at first (she hadn't been on the tramp since before the brain surgery...) but she remembered all her old "tricks" and showed them off for me! It was fun, Alyvia LOVED being outside in the nice weather.

Now if it'll just warm up and be summer already...!

Woah...catching some air!!