Baby back in the hospital!

[Brandi]

Lorelei (yes that is the right spelling) is back in the hospital. She is running 103.5 temp and the dr's don't want to risk anything so they are back. My sister is handling it so far ok. She says sometimes she feels very strong about it and other's she just wants to cry. I said i believed that was normal. But it sounds like we are all getting a better grip about the whole thing. But I do feel bad that they had to go back.
My brother has suggested that maybe our older niece come and stay with them until school is out. Unfortunatly she is not getting the attention she needs. No fault of anyone. Just that the baby is the center of all the attention right now. My sister is thinking about it but is worried that thier life should try and hold on to some normal. Anyway waiting to hear from them from the hospital.
At least she was able to get stuff from home this time. But she had to do it alone cause my brother in law was not off work yet.
I will stop babaling now.Just pouring it out.

[LBTC]

{{{{{{{{{{{{{{{{Brandi, sister and Lorelei}}}}}}}}}}}}}}}}}}}

Sending butterflies to cool her temperature, and to bring peace and calm and good feelings.

How old is the older niece? Does she understand what's going on? If anyone can spend some one on one time with her, I think that would be good. She is probably going through a lot of emotions just like you and your sister are, but she's probably too young to understand or express them.

My thoughts and butterflies are with all of you,
Hugs,
~T~

[Brandi]

{{{{{{{{{{{{{{{{Brandi, sister and Lorelei}}}}}}}}}}}}}}}}}}}

Sending butterflies to cool her temperature, and to bring peace and calm and good feelings.

How old is the older niece? Does she understand what's going on? If anyone can spend some one on one time with her, I think that would be good. She is probably going through a lot of emotions just like you and your sister are, but she's probably too young to understand or express them.

My thoughts and butterflies are with all of you,
Hugs,
~T~

Noel is 10. She kinda understands but it is still hard for her. We are trying to work something out. Either coming and visiting me for a week or going to my brother's. His house is all kid. He has three of he's own. And he is a great dad. And my sister in law is a good mom I think they would be good for Noel right now. Besides she is starting to have some troubles in school. So it might be good for her to get some attention.
Mom and Baby are resting right now. Baby is on IV antibiotics and fluids. I sent your butterflies to them!

[Running Mommy]

Oh MAN Brandi!
Something is not right- as if ya'll didn't know that...
Scary scary thing not being able to figure it out. UGH!
And inserting my .02 here. I think your neice going to stay w/your bro sounds like a fab idea. Esp. if they are a grounded family who can show her some stability. She prolly needs that right now.
Ok, back to prayers for the little pumpkin!

[Tuckervill]

Sorry to hear that, Brandi.

If your niece ends up with some chronic condition, there's not going to be any normal again. I understand your sister's desire for that for her other daughter, but the reality is that Noele's sister is sick with some unknown thing. If your sister can't be there for Noele, it would be best if someone else who cares about her can be. What a wonderful thing for your brother to offer.

Karen

[sundial]

I'm so sorry your niece is back in the hospital. Maybe the doctor's can determine what's causing her problems.

[blueskies]

Oh, Brandi, that's tough. You've all barely had time to start to understand what this rare condition is, and already back in the hospital for the little one. I hope that they're able to get that fever under control soon, and finish up the final tests, so that they're able to come up with the best possible treatment plan for Lorelei.

It does sound like the good news is that your sister has a great extended family, including you, that are offering just the kind of emotional and material support that she'll need as they go through this difficult illness.

Keep us posted, ok? So you can support your sister, and we can support you.

(Hugs)

[Mr. Bloom]

I'm glad for several things:

• The problem's not a mystery and they know what they're treating
• Your sister is starting to accept the situation and is finding some inner strength
• The entire family seems incredibly supportive and very much in it together

You're doing great Brandi!

[mimitabby]

aha, autoimmune disorder. How awful to be happening to such a little kid.

[Brandi]

I woke up this morning with a cold sore on my lip. I always get them from stress! I got this from my grandmother when I was little I am sure of it. You know before they knew you could spread these kinds of things. We thought it was genetic. "Oh look just like grandma" must run in the family! Yea!
I need to ride more! With the weather and all it has been hard. Not complaining I know some of you are stuck on trainers for a while longer cause of your weather. We don't have a trainer. Should get one though.
Anyway have not heard from my sister since yesterday morning. Not sure what is up.

[bikerchick68]

wow.... I hadn't heard what was going on Brandi... that's a lot for a family to handle. It's gotta be scary for the Noele as well... I like the idea of her having short "getaways" with the family. Kids process trauma differently than adults and some escape time could be good and healthy for her too. Your poor sis... having a sick child is every parents nightmare. I feel for her... glad you have a supportive family to be there for her and her DH too.

[Bad JuJu]

That poor kid--and poor family, too.
Hugs and positive thoughts coming your (and their) way.

[blueskies]

Oh, Brandi,

What a roller coaster of emotions you all must be experiencing...

It's got to be very frustrating to get changing answers on the diagnosis, but try to remember that it's a very good thing that they did these further tests to confirm before starting any treatment. Her best outcome will come from an accurate diagnosis, so she gets just the right treatment. That place of not knowing is very difficult to sit through, I know.

Hang on to the HOPE. I have 2 friends whose babies had congenital problems that required cranial (skull) and brain surgery as infants, and another friend whose daughter had a cancerous brain tumor as a toddler. All 3 of those children are happy, healthy teen-agers now who don't remember their early medical traumas at all. Their moms won't ever forget, though.

It's a very helpless feeling to see a child going through these things. My heart goes out to all of you.

(((More hugs)))

[bmccasland]

(((((((((Brandi & Lorelei))))))))))))

Unfortunately wee ones can't point to something and say it hurts here, or describe very well what's going on, how long it's been going on, or if things have changed. That's what makes pediatric medicine so difficult - according to my cousin the FP Doc.

Do you feel like your neice's life is a episode of "House" and you want it wrapped up at the end of the hour?

[Brandi]

The baby had two operations today. Very involved and both for samples. They are now saying they think it is not what they thought! Huge fricken sigh of frustration now! My sister sent me a pic (she asked first) and I almost freaked out from saddness. She has almost no hair now! And has hug incisions on 2 differnt places on her head. One from a couple weeks ago and one on top of her head from today. Today they took a piece of her skull and bone marrow tissue sample. It is just awful.
While riding today I almost broke down But some how sucked it up. I think to much when I ride sometimes. So I stopped thinking. Almost don't remember the ride.
We are all back to being mad. We had an answer and now they are 99% sure it is not what we thought. (shaking my head).
I had to let my sister just vent. And she vented about everything!
Her temp has been gone for a full day now. SO 1 good thing. But almost back to square one.