Arianna did just fine.

Our Botox procedure went very well. It does seem that it takes longer for the pre-op stuff than it does for the actual OR time. Arianna had a more difficult time waking up for the anesthesia than normal, she cried a lot but couldn't really open her eyes. She was however very hungry, but they only let you give them pedialite, but it did fill her tummy for a little bit until we were home. The Botox has not kicked in just yet, I am hoping by morning we will start to notice a change.
As this was an early start to my day I must say,
Goodnight, I am tuckered.

What do I do?

Today I went to Arianna's school for their Halloween party. While there I learned that the school is needing to cut back because they have lost funding. They decided that cutting the nurses that care for the kids that are high maintenance, like Arianna, is the best place to start. They plan on replacing them with someone who is not a nurse, which to my is not qualified to take the position, and that one person will take the place of three nurses that are spread in three class rooms. I have tried calling the blind school director, but she is out of the office and her voicemail is not working. I have debated calling the superintendent, he is the one that said the school needs to have qualified staff for all positions, but he is also the one making budget cuts. How do I solve this problem? I will not send Arianna to school if she does not have her nurse, and that would hurt Arianna, she loves school.

As for the Halloween party, it was a blast. Arianna and I decorated a pumpkin and frosted cookies. She wanted to play in the sensory room pretty much the whole time, and that's ok cause she is happy there. I will post pics I promise.

Tomorrow Arianna is going in for another round of Botox on her salivary glands, she has gotten very gooey since her first cold this season. This should be an in and out thing and we will only have to be in the PACU until she is ready to go home.

Nurse Tiffany's friend was discharged last night and went to see here new baby girl for the first time, she was a bit shocked by all the stuff hooked up to her. they are both doing ok. She sends her thank yous to all that have donated to them, she really feels the love of this community around her.

Thanks!!!

I just want to say a big thank you to all that have already stepped in to help. I have received a bag of clothes from Kristen, and a rocking chair was also given to me from my neighbor. And others are sending things, thanks Jen. Jen also reminded me of how even though we may all be struggling, that there is always a way to help others the have less then you.

Just to clarify, because I read my post and I had many typo's.
Mom relocated here to Utah from CA. She is going through a divorce, she is living with her sister in a two bedroom apt, with her sisters kids. She is doing better today as far as the stroke issue, she did have a high blood pressure this morning and will not be discharged as planned. Baby is still in the NICU, and there is signs of brain injury due to the hypoxia, they are guarding her medical status until mom is able to be there. I will try to keep all of you updated the best I can.

Thanks for the help and prayers for this family.

Julianna

*****Urgent Need For Help*****

I never ask anyone for anything, but today I am.

Arianna's school nurse asked me today if she could have any of Arianna's clothes that she has out grown. Explaining to me that a woman that works at the school, and just moved her for CA, had a baby girl on Saturday. The baby aspirated muconium and is in the NICU, and mom suffered a stroke yesterday. She has absolutely nothing for her baby and now will have hospital bills to pay, she does not have medical insurance to cover any of the unforeseen cost.

If any of you out there have little girl clothes that you were planning on getting rid of, or any baby items that would be useful to them I am pleading for you to let me know, I will find away to get them to her. We have found a crib, my parents neighbor just so happens to have one that didn't sell at her garage sale.

Please e-mail me @ arnasmom@yahoo.com and I will give you an address to send stuff to.
Thanks in advance for all the help and support.
Love really does go round here.
Julianna

Funny Pic

I found this pic on my parents computer and just had to post it. This is Arianna's cousin Zarek. They just love each other, although it looks as if Arianna is ready to sock him a good one in the kisser. Really she is just trying to figure out how to get him closer to give him a kiss.

No news is good news...Right

Not much has been going on, other than a bit of a cold going around. First Arianna came down with it, but she is feeling much better and went to school today. But now I am sick, all stuffy and my eyes burn, but that could be from all the sheet-rock dust. Matt and my dad have been hard at work on the bathroom in the basement and are just about done with the walls, one more sand and coat and then they can paint. I can't wait till it is done, then I wont have to go upstairs a 2 a.m. to go potty.
I am getting very excited to start work on our house, but we don't even close for another 30 days. the home inspection is tomorrow, I hope everything is right.
I really wish they was more to update about, but life is just... well boring, but boring can be a blessing all its own!

We have a House!!

We found a house, put in an offer, and it was accepted!!!! It will take about in month to close and probably another for us to fix up a few things and then move in. I am very excited.

Arianna is feeling better, no more fever, but still a little cranky at times. Her H1N1 came back negative but we will continue with the Tamiflu, don't want to take any chances. Thanks for thinking of us and praying for her, it means a lot.

She is sick

So Arianna had a low grade fever for two days, then yesterday afternoon she went up to 103.1. I took her into the the doc, and while there she started to have seizures due to the high fever. We did all the normal test and her CBC came back at 21,000. We are still waiting on the H1N1 test to come back but her doc started her on Tamaflu anyway. She doesn't have the high fever today, and seems act a little happier, but she is not yet out of the woods.

We have however found a house that looks like it would work well for us, with a bit of fixing up/updating. It is on a huge chunk of land, .74, Kenna loved the backyard and ran around it for an hour. We are putting in an offer today, lets hope we can get it!!!

Oh Arna

So I got a call from Arnas school nurse, she was concerned cause she could keep Arianna awake, and she had a slight temp of 99.2, but her O2 sats were fine. She slept the whole bus ride to school, fell asleep during art, and slept through a face wash(she hates to have her face washed). So I rushed on up to the school to get her and bring her home. She was awake and playing in the sensory room when I got there, but I took her home anyway. She was happy and alert the whole ride home. I am doing her vest treatment right now to help clear out any junk in her lungs, and I think I will do a few extra today. She doesn't seem to have a fever anymore, but I will keep that in check too.
Her Doc is out of the office today, and the other doc thinks I should take her to PCMC if she doesn't improve. I think I will tough it out at home, no way do I want to be in the hospital, it is full of H1N1, no thanks.
Pray she only gets better from here.

Doing Pro-Active things

I have decided to take charge of my own feel goods. I have started running in the morning after I drop Kenna off at school. So far so good. I have run three miles both yeasterday and today. I feel so energized and happy, both of which I need. I spent most of this past weekend feeling depressed, lost and lonely. I miss being in my own home with my own space, but I do love being with my parents, they are a great help to me. I have lost touch with my friends and don't really have anyone my own age to hang with.
So yesterday I said I will make my own happy. I will reach out to my friends, make adult playdates, and take care of my Psyche.

I took the kids to get their hair done. Kenna had 8 inches cut off, it looks really cute and does this little flip. Arianna was not much into holding still but we got it trimmed up so it is all even, now it curls more! I will post pics when I figure out my parents computer.
I had a doughnut date this morning with Kenna at her school. We read a book while eating and drinking chocolate milk, it was fun, of course she didn't want me to leave when it was time for school to begin, this is the first time she has cried at school.
Arianna was to go on a field trip to This is the Place park today, but it got postponed until tomorrow due to the rainy weather. Hope it works out.

I haven't been much up to posting lately, I have had so much to ponder and consider in this life. With the passing of Tessa brought to my mind, again, the reality of Arianna's life and eventual passing. There are those days when she seems like any other child, learning and laughing at the life in front of her. I do so cherish the days I have been blessed with, but I also ponder why was it me, why have I been given the chance to raise this choice spirit. I know that she is here to teach me so many things, and raise me to be everything the Lord has planned for me.

Our life with Arianna has has its ups and downs, by far less downs then many of our friends, but we do have our trials. Watching her teach herself to crawl and her tummy, to sit up on her own, these things seem to have blotted out the nights of endless worry that she will not make it to another morning. I continue to question myself, did I do all that I could for her, to give her all that was necessary to make her life wonderful, happy and comfortable. She always reassures me with her death grip hugs and open mouth kisses on my cheek. I know that at the end of the day she has gone to sleep happy.

I know that my biggest trial in this life is to make sure I have done all I can for Kenna. She often gets left out or forgotten. Her feelings easily hurt. She has been through so much in the past 3 years, I only wish I knew how to make it all run smoothly, to give all that both of them need without running myself into the ground in the process. I continue to struggle with this.

I do tend to absorb what is around me, the mood or atmosphere in any given place, it is my biggest fault. I always seem to borrow others sorrow, it is not very healthy. I always want to make sure my family and friends are taken care of, I am a very generous soul. I rarely ever ask for the help I may need. One of the greatest benefits of living with my parents is that my mom wants to take care of Arianna, and is there to help me with her when Kenna needs my full attention. Even if I don't want it, but I do love her help.

This has just been my vent. My next post shall be much more fun and entertaining. Many good things have been going on.

Julianna

Food for Comfort

I borrowed these from Becky's blog, but I feel that they express so much of what is needed today. The soul needs to be fed with comfort words.


Russell M. Nelson
"Parents who have surrendered the sweetest and smallest flowers from the family's garden need to remember our Heavenly Father. He has promised a special reward to those who now suffer in silence, who spend long days and longer nights through their trying times of bereavement. Our Creator has promised glory. He said, "For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but nigh at hand."

(D&C 58:4) That promised glory includes the blessing of reunion with each child who has left the family circle to help surviving members of the family to draw nearer to God. Those children still live and are a heritage to the Lord."

Tessa Joy Bethards was laid to rest today, with the sun shinning bright in the sky. A calm and peace settled around, the joy of this little ones spirit filled us all.
Thank you to our Heavenly Father for this special gift, this special time with a choice spirit.

Angel Wings

It is with a sad and heavy heart that I write this post. Sweet Tessa has returned home to her heavenly father. Thank you all for the prayers for her and her family. The true miracle of Tessa's life was realized, given the chance to meet her parents and brothers and sisters. The love and joy that she brought to the world you never be forgotten.

Prayers for Tessa

Please pray for baby Tessa. She was born on September 30th, Full Trisomy 13 with a congenital diaphramatic hernia. She is stable and doing will on the oscillator, and will have surgery in 5 to 7 days to repair the CDH.

Her mom and my husband grew up together and their families are still close. We also went to high school together, but were only recently reintroduced due to us having Arianna and their prenatal diagnoses. I had the chance to meet Tessa today, and she is just so very beautiful. It brought back so many memories of our first days at PCMC after Arianna's birth. I grateful that this family has allowed me to be a prat of their journey, and I hope that I am a great source of info and comfort for them.

Please keep them in your prayers, that Tessa will be stable enough for surgery.