Arianna Walking

It may not look like it to most, but Arianna is doing all the work, her PT is really just holding her upper body. Arianna moved her legs forward, it was like it just clicked today how she was supposed to do it, and she had fun. She did this for about 20 minutes or so, the PT was the one that needed the rest.

Sorry it is sideways, I don't know how to fix it on this computer.

The Sum of It

For some reason, I do not yet know myself, I have just not felt like spending time on the computer, or updating my blog when I am on. So I will try to sum up what is going on.

We had a very nice Christmas, it was made just a bit easier by not having to travel to two separate houses to visit with the Grands. I much enjoyed the sleeping in that Kenna let us all have, in fact I do believe I was the first one up at 8:30, and that was just to let Thirsty out. Yes we now have our sweet doggy. Another couple that had a dog in OR decided to go pick up theirs and asked if we would split the fuel cost and they would bring Thurston home for us. Couldn't pass that up. He came home on the Saturday before Christmas, what a gift. He loves to be around everyone, but sleeps in Arianna's room. I love the way they play with each other, she rolls on him and he just licks her. We have really enjoyed having him as a part of our family.
Matt is getting so much work done at the house and we expect to be moving in in about three weeks. We pick out paint colors over the weekend, and he and my dad are working at getting all the walls covered. Our flooring arrived last Tuesday, just have to have the paint done before we start on that. net will come the carpet in the living room, the rest of the house has really nice hard wood floors. We ordered new cabinet doors, custom work, should be done on the 5th. Things really do seem to be moving along now!
I got Kenna registered at her new school, she will start back on the 4th, but go off track on the 25th. we couldn't get her on the same track, but we were able to keep her in the a.m. class. Her teacher is very nice, they also have a bunny in their class room. Should be fun.
As for Arna and her health, it seems to be good. Her gut has been bugging her, I think all the antibiotics messed her up, we are giving her pro-biotics to help it balance out. I think she is ready to start back at school, she has had enough of me I'm sure.
Well that's the best sum up I can do.

Simple Sunday

So this latest illness seems to be croup. But you really wouldn't know that Arna is sick, other than the horrible barky cough. She has done more sitting up on her own today than she has done in the past month. She is very proud of herself. Right now she is having a little 'with my dinner' snooze, wouldn't it be nice to multi task like that.

Even though her lungs look like crap, I think we will be over this quickly.

Thanks for your thoughts and prayers, they always help her, and me through these rough patches.

Wordless Wednesday

Sleepy baby sleep, get better quickly!

Modays....Augh

Arna woke me up this morning at 5:00, she was crying and coughing. I took her temp, 100.4, not high for her. I gave her some Tylenol and sucked out her junk, she went back to sleep. But then about 10 minuets later she was crying again, the seizures had started. It seems every time that she has even a low fever she starts to have them these days. So i held her in my arms to keep her arms from flailing about while Matt gave her a loading does of Phenobarb. She did go back to sleep after 20 minuets so I put her back in bed, I will roast her if we cuddle to long. She woke up again at 8:00 and the fever is still low, but seizures are under control. Looks like this is our worst winter for the little colds, but the best year so far for we have not been in the hospital. Keep praying it stays that way.

We got a lot of work done on the house yesterday, when I say we I mean Matt. Old carpet, gone. Wood panel walls, gone. Part of the wall between the living room and kitchen, gone. All of the cottage cheese sparkles on the celling upstairs is gone. now for the bathroom, we are going to put the laundry in the main bath cause it is a huge space, and I really don't want to go downstairs to do the laundry. I was hoping that we would be in before Christmas, but I don't think that will happen. no biggie, better to do it right than fast.

I really have not been around enough to post lately. I have been busy with all the holiday hub-bub. Family gatherings, shopping, and general craziness. I helped decorate trees for the Festival of the Trees on Monday. Tuesday I got to sit Ella, while her mommy was at work I loved it so much. She is such a sweet little one, I almost want another of my own. Wednesday I went back to the Festival to be a hostess for a few hours. Today though I have been slowing down a bit to enjoy the after school hours with my kiddos. rolling around on the floor with Arna is really fun, Kenna and I have had a tea party, with Scooby Snacks(gram crackers). Tomorrow I get to have brunch with great friends, Becky she is visiting, Lacey, and Erin. It should be quite the silly gathering.

As for our dog Thirsty, he is in Oregon and we don't know when he will be coming home. They will send him on the puppy truck for free, but not until March. They don't drive puppy's to UT or CO in the winter. I could spend $350 to fly him in, or we could drive up to get him. All options stink right now, I don't have the money and I hate to wait until March. Hopefully another trainer could possibly bring him home if they go to a graduation, we'll just have to wait and see.

Work on the house is going well but slow. the upstairs is all clear of the cottage cheese sparkle celling. The basement is causing problems with the carpet wall, it wont come off. next will be the carpet in the upstairs and paint on the walls. we will also be moving the laundry for down stairs up into the main bath, right by the bedrooms. It is a huge space and the plumbing is right there. Our goal was to be in before Christmas, but I don't think it will happen.

I will try for better updating, but no promises.

Here comes Thirsty

We are getting a dog, his name is Thurston, we call him Thirsty. He is a year old black Lab that has been in training to be a guide dog for the blind, my sister-in-law Stacey has been his handler since he was six weeks old. He was not able to complete the program due to he has a soft trachea and the harness chokes him and makes him cough. He is however still able to be a companion dog to someone like Arna. He will go through training to alert us if she is having a seizure or difficulty breathing. He has always been so careful with Arna and never tried to take off with any of her tubes. she loves to give kisses to him, she licks his tongue, I know a little bit gross but very sweet. Most of all he will be a part of our family, we have missed our sweet dogs and have wanted to get new ones but wanted to wait till we were in our own home. This is such a great opportunity, I don't have to go through all the puppy training and house breaking(sweet). I am grateful that Stacey wants him to be with us, and she is happy cause she will still get to see him. Don't know when exactlly him will be coming back to Utah, but he will be living with Stacey until we have moved into the house.

Merry Christmas to us!!

Sleepy party goers

This is what happens when you go to the Ruggs for a birthday party. Thanks Lacey and Ray for a great night. Glad we could celebrate Jaxson's birthday with you. We are blessed to know you.

EOB solved ?

So I made lots of phone calls yesterday. The first person I spoke with at my insurance told me that all that was owing was our 20% of the bill, only $1473.85. But I told him that we met our out of pocket and should not have to pay a dime. he said that National seating was out of network and was not fully covered. But you see in 2008 they were owned by Praxair and were covered, and that all equipment ordered under Praxair would be covered under contract. I only learned that by calling National, they were very helpful and said I didn't have an outstanding bill. so another call to the right person at the insurance, and she told me they would get it reprocessed/coded correctly and we should be in the clear!!!!
I hope they get it right this time!!!!

Bad Idea Just Before Bed

I just opened an EOB from my insurance. It is a claim for Arianna's wheelchair, for 12/12/2008, and I just got it today. It is stating that we owe $6200.00 for the chair. I was told it would be full covered due to the fact that we had met our out of pocket max. I really don't understand why they are just now figuring this out. I have some phone calls to make in the morning. I am trying to find my center, I don't want to fester. After they bad night last night I really need to sleep.

So my advice to you all..... NEVER open EOB's just before bedtime!!!!

Feeling better

Arna must be feeling better, she woke up at 3:30 this morning. She was happily playing in her bed, but keeping me awake with all the kicking and music playing from her toys. I am so tired. She just fell asleep during her Vest treatment, so I am heading back to bed myself. I don't want to be a grump all day.
We are now pretty sure that this illness is just another aspirational pneumonia. we are treating her with augmention and increased Vest therapy, hoping to loosen the junk and get her better quickly. I am very happy we did not have to make any trips to the hospital. She is holding her own here, pray she stays that way!
Thanks to all that have kept her in your prayers!
Good night!!

Sick Again

I can't believe this, but Arna is sick again. She has been waking up with fevers and seziures for a few days now, but no other symptoms. I was hoping that perhaps it was temp regulation issue, of course that isn't real easy to solve. But no Arna is fighting some thing. I took Arianna into the doctor this afternoon, hoping we could figure this out. Well our ped sent her for a chest x-ray, and after seeing that it was not any worse than her normal cloudiness we went for a CBC. The WBC came back at 30.5,(30,000) the last time she was that bad she had a strep-bacteria pneumonia. She sent us back to the lab, which is in the clinic, for blood cultures, a Phenobarb level and a UA. Then back to her for the first round of Rocefen shots, we have to go back in tomorrow for another. Her doc called tonight and said her UA came back clean. I know we haven't found out the exact cause of the fever yet, but it was a good start. The only test we didn't run was a VRP, but she doesn't seem to have the respiratory issues that would prompt us to do one. Her lungs are moving air really well for her. For now Arna is sleeping, went to bed at 6:40, I just hope she doesn't feel the need to wake up at 5:00. Please keep our family in your prayers.

Got the Shot, oh and the House

Kenna, Arna, and I all got the H1N1 vaccine, Arna and I did fine, but Kenna freaked out and screamed so loud. I had to hold her facing me and the nurse had to get to her arm in between my arm. Once it was done she was okay, a little teary, I took her over to Jolley's and got her a reward. We were also able to get my sister and her son the shot too!!!!

We closed on the house this morning, I got the keys but we can't go in until the deed is recorded tomorrow. I was so tempted to go today, but I didn't, I was a good girl. I can't wait to get working, so much to do in the living room and kitchen, carpet, paint, and scraping the sparkle popcorn off the celling.

The Week in Review

I have been to busy to post more often so here is what happened and what will be next week.

Arna only went to school on Monday due to a very weird fever that would come and go. I took her to the doc on Wednesday and she didn't know what was going on, probably just another bout of Rhino virus. Arna is also pushing out her three year molars, but that would not cause a 103. fever. She is going to see the dentist on Wednesday , I think she has a tiny cavity on her lower front tooth, hard to tell what it is. With her not eating orally I don't know how she would get one, but I will admit I am not the best when it comes to brushing her teeth(bad mommy). I am working on it. She was fitted on Thursday for a walker, check it out, www.primeenginering.com, the KidWalk. She tried out a different style at the clinic and did pretty well in it, she liked being upright and still able to move a bit. It will take some time to get her to use her legs and feet to really move, then I will be in trouble. She will explore everywhere I'm sure.

On the 12th we will close on the house, I can't stand the wait any longer. I would really like to be in the house by Christmas. If we get enough help from the brothers we just might be able to pull it off.


I have been following a family in La that is getting ready to welcome their little boy with Trisomy 13, Henry, in January. I learned last night that he will be coming on November 9th due to sever complications. please remember them in your prayers that she will have a safe delivery, and that Henry will be able to spend some time with his family before returning home.

Augh

Arna woke up with a fever, low grade but I didn't want to send her to school. i am so done with this cold and flu season, and it has just begun. lets just pray it's something silly, like teeth.

side note, baby Emma, the little one you have all help out, may be coming home this week. she is still not eating well and the docs want to make sure she can do it before she can come home. but otherwise she has improved greatly. her momma sends big thanks and tears to all that have opened their hearts to her.

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.

****Childrens Tylenol Recall*****

Please check this list before you give any Tylenol to your kiddos. There is a bacteria in the lot #'s listed. This is a link to the list
http://www.tylenol.com/generic.jhtml?id=tylenol/news/subpchildinfantnews.inc.

Keep your kiddos safe and healthy.

Well.....

Arianna was not able to go to school yesterday and today, she has Rhino virus. She hasn't been acting all that sick but she has a ton of snot so the school nurse told me to keep her home. I know that she has missed being at school, she loves it there. There is no school until next Tuesday, something about UEA, they need 5 working days off.

We are still trying to get settled in my parents house, I am having a real hard time sleeping, it may be my bed but it's not 'my' room. Just when I start to feel comfortable we will find a house, move and it will start all over again.
Kenna broke my heart the other day. She got in trouble for something and I asked her to go sit on her bed. After a few moments I could hear her crying really hard so I went to talk to her. She told me she just wanted to go home, back to her purple room that makes her feel happy. i really didn't know how to make her feel better, I just hugged her and explained it all over again why we were here with Noni and Papa, and how much we all love her. I told her that I too wished we could be 'home', that I also missed my pretty little house.
House hunting stinks, driving around and looking at the outsides before we even go to see the insides is exhausting. I get so car-sick with all the turning and reading of address, I told Matt I needed a break tonight, the weather has also helped me on that fact. It is sooo windy and might rain, I just want to cuddle up and watch a movie with the fam.
I have just been informed by my mom that dinner is ready, it is nice and not to have her cooking for me. Don't get me wrong we take turns cooking dinner, I am not a loafer!!!

It is Done!

Well we are officially all moved out and homeless! but we are getting settled in at my parents home. We finished with the move last night, we said our good-byes to the house at 12:30 a.m. and got our bed set up and our dresser in at moms and climbed in to sleep at 1:30 a.m., needless to say I am tired. I cried a lot when I walked through the rooms of our house, my whole married life has been lived in those rooms, I have watched my children laugh and grow there, I will miss it greatly.
I discovered this morning while putting away Arianna's clothes that I did not recall packing the coats out of the coat closet. So I zoomed over to the house, and the new owner Bryan was there moving things in so I could go in and look, and yep there were all our coats. He was surprised that was all that we forgot, since we moved everything in 3 days. I was surprised that neither Matt or I had thought to look in that closet when we walked through the house for the last time. I guess we were just too tired!

So school for Arianna is going well. She has a nurse that is with her all day long. She comes to the house in the morning and rides the bus with her, that makes me feel a bit more secure. Arianna went on her first field trip on Tuesday, they went to the Tracy Aviary. Her nurse Tiffany said she loved it. There was one bird that was swaking that made Arna laugh. I wish I could have gone with, but I only found out about it on Monday and I had a ton to do at the house. Next time I will be going!

Kenna really wants school to start again, and so do I. One more week and she'll be back. I decided to leave her at the same school until we move to our new home, why change schools twice.

I will now start looking for a house, let's hope it goes quicker than it did to sell!!

Please keep Jaxson in your prayers, he is going in for surgery tomorrow.

Quick update!

I am packing my brains out, we have to be out of the house by wednesday night. Here's to no sleep for the next few nights.

Arianna started school today, I think she really liked it. She fell asleep on the bus on the way home. Mom however cried while I packed, I missed my baby.

Last Trip to the Lake!!

We are planning on a trip to Lake Powell before the summer ends, and before we pack up and move. I can't wait for the sun on my face, the sand in my toes, and not worrying about the house!

not much else for me to say. Do visit Jaxson blog, Lacey has much to say today!!!
It should remind us all that life is a precious gift, that is why today is called the 'present'.

remember to pray for those that gave Paul his new heart, life was changed for them.

Under Contract

So we got a good offer on the house last week, I believe this one will stick. We are now in the process of packing the things we don't need out anymore. Our whole house will eventually be in storage, we are moving in with my parents. Strange to think I have been there done that, just twelve years ago Matt and I lived with them until we closed on this house. Now were moving back in, just until we find the house that works for us. I feel like a little kid again, I hope I don't have to ask permission to use the car ;).
Arianna went down to the basement again yesterday, only this time she did it feet first and on her tummy, just like a normal eight month old. I told her that she still is not allowed to do it on her own, not until she can crawl back up on her own!!! She is still working very hard on sitting, and can even do it on the hard wood floors with little slipping, she uses her hands more to support herself there.
Kenna is off track now, so she gets to help me pack. She is not very fond of the idea, too hard she says. she is excited to have my old bedroom at my parents house, and the cool bed Noni has is a bonus!!
Here's to a quick and successful move!!!!

Busy as Ever

Well let me see, where should I begin. We went camping over the weekend, Kenna is getting better a handling her 4 wheeler, she thinks it is cool to stand while ridding. Arianna spent a lot of time in her port-a-crib out side, she really enjoys it, she is with everyone and can play with her toys. She is trying very hard to sit up on her own, she pushes up into a prop sit and can balance there for a little bit, just don't cheer she'll fall over. I am working on finding pt/ot for her, we have been without since the end of June. I think we might end up at Shriners, they are amazing.
We went to Cardiology today, and everything is looking and sounding good. I just remembered however that I forgot to get new scripts from the Doc, oh-well I guess the Pharm will just call in. I am happy to report that Arna now weighs 32 lbs and is 37 and 3/4 inches long, will this kid ever be like the norm that goes along with Trisomy 13? I doubt it. I know that her size has been a blessing, I do believe that it has helped in her strength to overcome so many illnesses and to thrive into her third year. I pray for many more such years.

I had three showings of our house yesterday, same people twice, lets hope these are the ones and we can finally find the place we are supposed to be! I have another showing tomorrow, good thing the house is still clean!!

Kenna goes off track on Friday for a whole month, I was just getting used to our new routine. I still have no idea when school will begin for Arna. We will just plan lots of camping trips before the weather gets to cold, I love the mountains in the fall!!

I hope to post pics soon of Arna sitting up, and of Kenna on the wheeler. Maybe this week!! Keep looking!!!

Well life has made some interesting changes. I have to make my butt get out of bed every morning at 7:00 a.m. so that I can get Kenna up and ready for school, so far it has not been all that bad. It's not like I remembered it being when I had to get up and go to school, I was unbearable. and it is nothing like getting up to go to work, it seems much more relaxing, enjoying a quiet breakfast with my big little one, while Arianna happily plays with her toys. One set back though, Arianna was to begin pre-school on the 24th, but the new class rooms for the elementary blind school have not been completed so those kids have to use the pre-school rooms until theirs are completed. So school for us will not begin until mid to late September, sigh. I was looking forward to two weeks without kids before Kenna goes off track on the 6th of sept.

We have had lots of lookers coming to our house, honestly you'd think somebody would have bought it by now. I can't wait until I don't have to be so neurotically clean and Kenna can leave a toy or two out. And Arna's toys can stay on the floor too. I want to be messy again!!!

Kenna is going fishing with her Dad and Pappa Paul tomorrow, I know she will have a great time, and Arna and I shall veg in the coolness of the basement watching some flix!!!

I have no internet

Just so you all know, I have no internet at home, so the post will be few and far between.

ON tuesday my big girl Kenna started kindergarten, I cried the whole way home. She loves school and can't wait for the next morning to come. Arianna will start school on the 24th, I am scared to let her go, but I know it will be good for us all.

I have been really busy and can't seem to stay on top of everything, but life has been good. No we still have not sold the house, and that's okay. We have been out camping lots. Enjoying BBQ's with friends, thanks Lacey! I am looking forward to the annual SOFT bbq, lots of fams of kiddos with all those crazy Trisomys, I love to be with them, they are a great bunch of fams. I missed going to the annual SOFT conference, but it was in Roanoke VA and we just couldn't go.

Plans are being made for a Snell fam trip to Lake Powell, can't wait!!!!
I will try to post pics of things we have been doing when Matt lets me use the laptop here at the shop.

Keep on smilin!!!

P.S. Joy if you are reading this please call me, I know your mom and Matt's mom have been talking, Marilyn wants us to get together, and I would love to have you meet our SOFT friends. With school starting we should be able to work something out!!!!

Camping was a blast. Kenna did not want to be out of the water. We had our own little sandy beach and lagoon. She played so much that she was to tried to stay awake for smores, she did request that we wake her when we did them though. I had fun as well, we bought a new towable for the boat, a three person tube thing, I was out on that for every ride but one, and when I was driving the boat so Matt could play on it. We also borrowed a Molecule from Matt's bro, that was a blast. I loved listening to the water crash onto the rocks right outside my window, it put me to sleep. I was sad to pack up and come home. This morning I got myself geared up to do all my laundry and guess what, my washer is broken. So I am at my mom's house doing the essentials. Matt will try to fix the washer tonight. Some one is also looking at my house as I type this, I hope they want to buy my house!

Kenna will start Kindergarten on Aug 4, and so I must go out school shopping, what a shock to my system! Arianna will start school in September, I am not so sure what I need to get for her. This year has gone by way too fast.

Home and Well

Arianna came home on Saturday evening, and she is very happy. We have been fighting fevers every morning, but they go away with Tylenol and she is fine the rest of the day, I called the docs today and they said to just keep an eye on her, I know the drill.
My Internet at home is acting crazy, so here I am vi sting Lacey and Jaxson and I borrowed hers so I could update the world.
We have had a couple of showings of our house yesterday and today, lets hope for an offer!!!
Yesterday i went out and bought a slip-and-slid for Kenna, she loves it. I also found the inner child in me and took a couple of slides myself, in my clothes!!!! It was wonderful to just let go.
we are going camping this weekend, to the lake!!! I am excited to get away from life, lets just pray that Arianna behaves and no more fevers, or I will have to stay home with her.

Today

So I was sitting here debating what I was going to do. Should I work on the blankie Lacey has me doing, play with my Ipod, read a bit, update my Blog, or just go to sleep? Well we can see which one won tonight.
It has been a bit rough here, Arianna is doing good, but she doesn't like to be confined. She is in a bit of pain and the Lortab does not do much to help. She was wild and restless yesterday when all the drugs from the surgery wore off. I asked for pain meds, and they didn't help. I asked for Ativan, I know it works, and the doc said 'no we don't feel comfortable with that plan, it could make her breathing difficult (it really relaxes you), just try some 'Nuben', it will help.' NO it does not help, it made her even more wild. Have you ever tried to hold on to a thirty pound Bass fish? If not come hold Arna and you will see ow much fun it can be(lol). She has this drain in her head, and with all of her thrashing about I was afraid she would pull it out. So I had to hold her in my arms, I think they are about to fall off.
Well I kept bugging our nurse to get the docs over here and to get her some Ativan. Five hours after surgery and three hours of total wild girl, the attending agreed with me after coming in to see her and got some for her, she calmed down and went to sleep at 7:00 and stayed that way till 6:00a.m. She had a worn her self out completely. Why could they not just listen to me. I know my child and I am not new to this whole thing, I know what works.
So today she was feeling even more grumpy, the Lortab makes it so she can't poop. I asked for a suppository to get the ball rolling. I was holding Arna when our nurse came to put it in and well she put it in the wrong hole, but we both did not realize this until i check her and well it was poking out. I called for her and the tech came in , i told her what had happened and she went for the nurse. When she came in she told me that now that she thinks about it that was a little too easy to get in. So long story short, we start over again, right hole, and a load of poo later I make them change, she is feeling more comfortable. We have had to keep up on the Ativan or she just thrashes about. And she really just wants to be held while she sleeps, no fun for me my butt goes to sleep.
Matt, Kenna, and my parents came up last night and tonight to have dinner with us. It's nice to be with them, we both miss them all. My sister made cookies and brought them up, yum yum!
I have taken Arna for a couple of walks, but the stroller they have to use is too small and does not have shoulder straps, so she tries to fall out. The doc thinks that the drain will come out tomorrow and we will be able to go home, how nice, I miss my bed!
But sleep is now calling me and I can no long keep my eyes open. Good Night all!!!

Whew, she is doing well

First some cute pics of my girls!!!!

Arianna is a true fighter. She came through surgery just great, and is still sleeping. We just started her feeds and she is sucking on her lips, I would say she was hungry.

So the doc told me that this cyst was really a ball of infection, myopic(?) bacteria I believe he said. And yes surgery is the best way to get rid of it, the antibiotics used to kill it a nasty and have to be used for four months. To just remove the ball of junk is safe and very effective, the infection is contained inside the ball, no risk to the rest of her. As to how she got the this infection, we just don't have a clue. We are now just waiting till the drain that she has to be less that 15cc in a 24 hour period. She should be home in three days.

Here's a pic of her ear.

Here's the scoop

The nasty thing on Arnas ear is a 'first bracachial cyst', and it has to be removed. She is going in on thursday the 9th, and is expected to stay atleast three days. the surgery is alot like a face lift in where the incision is made, and the have to watch out for her facial nerve. they will also do botox again while she is under. The nasty bugger ruptured on friday, and oozed out like crazy, I had to keep gauze on it until today, it finally stopped.

On the fun side, we took the girls to the Western Stampede Rodeo on friday night, Kenna was all dressed up like a cowgirl. Arianna love the lights and cheering and the loud music.

keep Arianna in your prayers this week, we never know what she'll do under anesthesia.
Thanks!

This may gross you out

Arianna has a very weird growth below her earlobe. At first we thought it to be an infected lymphnode, but antibiotics has not changed it, infact it has gotten worse. I took her to see her doc today and she freaked out and said she was going to make some calls to get her into to see ENT asap. I do have an appt for tomorrow, but she is hoping she can get us in today.
This lump has not seemed to trouble Arianna much, but it is hard to tell what hurts when she can't tell us. She has had no fever, that's a good sign, I hope they can take care of it without to much pain to her, we'll just wait and see.

Happy Birthday to WE!!!!!

Yes it is a beautiful day. The sun is out from behind all the clouds and it should be warm today. I couldn't ask for more on this special day. Arianna is aready awake and playing in the living room, seems birthday girls don't need their beauty sleep!!
It is hard to believe that it has only been three years since our lives were blessed and changed, some days it feels like more, but I would not ask for anything different. I am glad for the strength and faith Arianna has brought to us.
One of these days I will write her story, Lacey has prompted me to do this, but I haven't found the time to just do it.
On a fun note, Kenna, Matt and I had a blast of a water fight last night, needless to say I got soaked. I don't know why but they ganged up on me. Arianna was on the deck just laughing at all the screams coming from Kenna, maybe next time she can join in. I love family nights like that one.
Now I must get a move on, busy busy day of fun ahead of me!!!

I wish I could say we have been out having tons of fun and that's why I haven't posted in so long, but the truth is I just haven't been up to it lately. We have been busy with lots too as well. Arianna got molds made for her new leg braces, she has out grown her Dafos and we can't put her in her stander without them. We were up at Shriner's to get those done, should be completed in two weeks.
We also had a wedding over the weekend, Matt's brother Nelson got married, didn't think I would ever see him do it, but Michon came into his life and really changed him, way to go girl. It was real fun, and the rain let up for the evening just for them. It was an outdoor event at my in-laws, my MIL loves to garden and has the most beautiful landscaping. About that rain, it seems it has rained everyday for the past two weeks, I feel like I moved to Anchorage Alaska, it may be all lush and green but too wet for me. It is nice we haven't had to turn on the sprinklers in a while. Kenna is ready for a break from the wet too, she really wants to play outside, and I have sent her out with the umbrella and rain boots but she just wants the sun!!! We also went to the airshow on the 7th of June, it was great even if it did down pour for about 10 mins, delayed the show while the Thunderbirds were in the air, but the rain passed and they continued. I would post pics but this old computer my parents gave me doesn't have pic progms and so I will just wait for the lap top.
This Friday is a special day. June 19th is my birthday and Arianna's too. She will be three, I never thought we would see this day happen. She has grown so much and is almost getting to sit up on her own, she still gets excited and falls over when she gets up. I would plan a big party for that day but Kenna also has her spring tap concert that night, so we'll just get an ice-cream cake for after the show.
I will post some good b-day pics this weekend when Matt brings the laptop home.

My Little Grad

So I promised I would post pics of Kenna at her Graduation, and here she is with her teacher Miss Lisa. I am so proud to be her mommy, she has grown so much in the past five years. I am excited for her to start kindergarten in the fall. Arianna will also start pre-school in the fall, I will be an empty nester!!!

Whats New?

Well today we went in for our FEES study. Arianna is cleared for recreational oral feeds with thick foods like pudding or yogurt. Her dysphaga(sp) has been improving. She has much better control of her airway and coughs away anything that goes into the wrong tube. I am so proud of her.
She is wearing her hearing aids all the time, doesn't even try to pull them out. I am working on getting her to wear her glasses along with them. We'll see what she does.

We have not yet sold our house, lots of showings, but no buyers.

We are keeping busy with trips to the park, and Kenna's last day of school is Friday, graduation is that evening, can't wait to see my big girl all dressed up in a cap and gown. I will post pics, promise.

Not SOLD

So Matt got a call from our agent today, the buyer on our home has backed out, as far as I know no reason was given. I am now very frustrated and upset. We spent the weekend driving around looking at houses, and I found one that we all like. Now we can't put an offer in because we still have our house.
I try not to complain all that much, but it really feels like we got the shaft today. All I want is to be in a good single level home so that Arianna has less risk of getting hurt and I don't kill myself hauling her and all her stuff up and down 12 stairs dozens of times a day. My back is really starting to suffer, and today I woke up to a bad shoulder ache and not able to turn my head fully to the right. I just wish things would go my way once in a while.
So, now I am back to the neurotic house cleaning and the disappointments that come after each showing, today life sucks!!!

Prayers For Ameila

Please keep Amelia in your prayers. Amelia is three years old and has Polysystic kidney disease and is getting her new kidney tomorrow. Please also keep the wonderful donor in your prayers too, this person is freely giving to someone they have never met to save a life.

Thanks to all
Julianna

SOLD

So we finally got an offer on the house, and we accepted. We just have to wait for all the other stuff in this process to be completed, about 40 days. Now I am in a mad dash to find some where for us to live, Matt brought home 52 pages, 2 homes per page, for me to look through. My mind is scrambled. There are so many to choose from, so today we will go driving, look at the outsides and check out the neighborhoods, the right one is bound to be in this stack, somewhere.

And Happy Mothers Day!!!

I thank so many of my mommy friends for helping me to be a great mom. Without your love, support, and advice I don't know how I would make it through out my days.
A big thanks to my wonderful Mommy, she is always there when I need her, and a great friend too. I love the times when we can go out to lunch without my dad and just laugh our butts off.
And thanks to my Hubby, without him I wouldn't be Mommy to two beautiful girls!!!

We are home

we got to go home yesterday. Arianna is happy to be in her own bed and to roll anywhere she can. I am happy to sleep in my own bed too. She is still a bit cranky from the ear infection, but Tylenol seems to help. We have 10 days of antibiotics and we should be in the clear. I hope this is the last of the yucky cold season, I am so ready for spring to set in and for us to go out and play in the sunshine.

Thanks everyone that prayed for a quick recovery, every bit helps!

Julianna

One More Day

So Arianna has a Strep/Pnuemo Bac infect. The Docs say we should only need to stay one more day just to make sure the second bac culture does not grow anything else. Bad part Arianna has blown her IV, they said they will just give her the next round of anti-biotics by injection. So here we will stay. Arianna wants to get up and move around, I got a mat for the floor but she keeps heading for the door. I asked for a swing but they can't find one yet. We did win a lion hand puppet when we played BINGO!!! Yeah for us!!!

In the Hospital

So yesterday Arianna woke up with a high fever and she was having break through seziures. I took her temp and it was 103.6, i gave her mortin and it went down to 102.5 and pretty much stayed there. Her O2 need increased to 1 ltr and I got and bit nervous. I thought we were on the mend from the metapneumo crud. Her ped is out of town and the other docs in the office didn't have an open appt, I through my caution to the wind and got Arianna up to the ER. What a wait we had. The docs finally came in, did the routine check, sent us for an X-ray of her chest and did a VRP and urine culture. Chest was not any worse, VRP came back negative and the urine was clean, so what is causing this fever I ask. They wanted to keep us overnight but I thought why, she is not any sicker than what I can handle. The floor attending doc came in, he knows us well, and I asked why can't we go home. He thought the same thing until he looked in her ears, her right on was infected. Mind you thie is the first time any one has looked and we had been in the ED for 4 1/2 hours. He tought we should get a CBC and blood cultures. She has a white cell count of 45,000, the ER doc has not ever seen one that high she said, so we got are papers to move on up to the floor. They are giving her IV antibiotics and trying to keep the fever in check. She slept well, and so did I, the nurse we have is really great. I hope this will be a short stay, I know how much Arianna is missing being able to roll on the floor.
Pray for her quick recovery!!!
Julianna

So here it is 1:00 am and I can't sleep. I laid in bed for 2 1/2 hours and would not fall asleep. I am completely exhausted and my brain is fuzzy, I just don't know what's going on with me. So i came to the computer and spent time looking at houses, and catching up on my bloggy friends, and now it's my turn to catch up.
Arianna seems to be holding her own, and seems to be getting better. Kenna had her first T-ball game today, she can hit really well, got a little upset when she didn't get to catch any balls. She just needs to get a little more comfortable with the game and the kids.
We have a showing of the house tomorrow, I hope I don't hear the same thing again. 'the kitchen is too small and the mobile home park (on the other side of a street and fence) is concerning.' I have told any that have asked that those that live there are nice, respectful and living where they can. The kitchen has served us well for the past 12 years and we fit just fine in it. I know there are lots of homes to choose from right now but I just wish someone would pick mine.
I think I have worn my brain out now, so off to be I will go, I hope I fall asleep fast the alarm goes off at 4:30.

Meta What?

So Arianna has been sick since last Wednesday. She had a seizure in the early am and then had a fever of 103 at 6:00 when Matt got up to feed her. We got the fever down to 101 but she was still having break through seizures. I took her into the doc that morning and they did all the normal work up, VRP, CBC and Phenobarb level blood work, and a chest x-ray. The chest looked a little cloudy, but her air movement was good. CBC showed a slight increase in her white blood cell(shows viral infect), and her platelets were high. The VRP, which takes a day to run, came back as Meta-Pneumo virus. I was stumped, I didn't know what this was. Her doc says it it a very nasty cousin to RSV, and it could be worse in many ways for her. So our big fight was to get the fever down, which would stop the seizures, and hope that her O2 needs would not increase. I have been very faithful in using her Vest therapy to break the junk in her lungs up, she has coughed out some good stuff. Her O2 has not increased above 3/4 ltrs, and the fever broke on Friday.
I have been dealing with major g-tube leaking, when your sick your digestive system slows down and the foods in your stomach do not move out as quickly. So I slowed her feeds and have been making sure she has a BM everyday so she doesn't get any further backed up. She is still pretty cranky and cries when she coughs too hard, but we are still at home and I know she likes that. She knows that at the hospital they make her lay in a bed and she can't roll around and explore. Besides, I have heard from a friend that works at the hospital that they are busting at the seams and have no empty beds, pretty unusual for April. I just hope spring decides to settle in for good and all the sick crap will move on .
Just keep Arianna in you prayers for now.

Ice Cream Please

This is a video I took at the mall yesterday. Arianna just loves ice cream, and how can I say no to her sweet face, and well she also grabed my hand to get it. You can see just how well she knows how to use her mouth, it is the airway that doesn't always know what to do. Maybe someday she will get the hang of it.

Ears

So we are in the process of getting Arianna hearing aids. I took her in to get the ear molds made but it could not be done until her ear tubes were removed. See the tubes that were placed last May had come out into the ear canal and her ear drums have healed over, the tubes were in the way of the mold goo and it would not have worked right. So this morning I took her to her Ped and they just flushed them out. We will be going to the school for the deaf and blind on Tuesday and the will do the molds, set the frequency on the aids and we will be on our way. I just hope she will leave them in.

I have been so busy. I have had two showings of our house this week, and I have been crazy busy keeping it clean. Sadly though both buyers love the house but not the kitchen, it is too small for them. I just don't know what to do anymore, I have changed the table so it looks as big as it is, but it still doesn't help. I hope that the right buyer just hasn't been there yet. Pray that they will find us soon cause Arianna is try to roll downstairs again.

Not much else is going on , and that is good.

So I feel like a bad mom lately. Friday I walked Kenna to pre-school, mind you it's just across the street, and I left Arianna on the floor of her bedroom playing with her gears. When I came back, about 10 mins later, I could hear her crying. I had come in through the garage and started up the stairs to go check on her and I found her in the middle of our living room. If you have not been to my house I will explain why this is so scary. Arianna's bedroom is at the end of a long hall which is a the top of eight stairs which begins in the living room. So needless to say Arna rolled out of her room, down the hall, rolled down the eight stairs and crawled into the living room. I scooped her up, checked her out all over, nothing broken, and then I just started to cry. How could I have let this happen. I took her into the doc and she confirmed that she was fine, but she did tell me to never leave her alone, even if I am just walking across the street. Well I don't know about taking her everywhere, but I will not leave her on the floor that's for sure.
I look at it this way, Arianna just wants to be like all the big kids, and take a tumble down the stairs.

Yesterday Matt bought Kenna her very own 4-wheeler, I am not sure if I am ready for her to be grown up enough to ride one by herself. She is excited and a little scared, Matt is going to spend a lot of time teaching her how to do it responsibly. She is very excited to go camping and ride all over the land. Let's just hope she doesn't break anything her first time out.

Now I am just waitng for Matt to buy me a toy I can ride. Maybe next year.

Update to all the med junk

So Arnas CT went well, she was given Versed only, she just looked like she was in la-la land, and just came out if it quickly. The ENT told us that she has a common defect in her middle ear, can't remember the name of it, but it will cause degenerative hearing loss, some day she will loose her hearing. But we can go ahead with hearing aids, I just hope she will leave them on.

Over the weekend Arna starts to feel sick, coughing allot and then crying afterwards. I took her to the doc on Monday and her Chest x-ray looks terrible. Her right lung is full of junk, but she was still moving air and saturating at 99. We got her a shot of antibiotics, which hurt like the dickens, and put her on oral steroids to open up the airways. She was been such a trooper and seemed to be feeling well, we went out for a walk yesterday and enjoyed the warm sunshine. Last night just after I got in to bed she started to de-sat in her sleep, down to 80, so I turned up the O2 and repositioned her on a Boopy to prop her up a bit, and she was doing better so I turned the O2 back down to normal and she stayed that way all night. This morning she is rearing to go again, and wants me to hold her so she can give me hugs and kisses, which she is now figuring out how to bite my lip(thanx Boofus). I left her in bed though, 6:00 is too early for her to be awake, she needs her beauty sleep. I am hoping she gets over this lung junk quickly, I really don't want to spend any time in the hospital.

A side note for those of you that don't know, I added a link for Jaxson's Blankies. If you or someone you know has a kiddo in needed of good cuddle blankie, please request one there. Lacey started it and has recruited my help and making blankies for sick kiddos. Most of them are out of state and Lacey just mails them off, but we did get to hand deliver one to Ben. He and his mom were in town visiting family when he got sick and admitted to PCMC. We were excited to give the blankie to his mom and then meet Ben as well. Please help in prayers to get them back home to NH, they miss the rest of their family.
Please visit the link sometime to see all the kiddos that have received a blankie, and maybe even make a donation to help us make more.

I will try to keep up on Arnas lungs the best I can. My parents are loaning me a computer to have at home since Matt needs mine allot lately.

Simple Joys

So I took the girls to the mall on Friday evening, I just had to get out of the house. Kenna thought it would be a fun idea to go ride on the carousel, i agreed. So that was the first thing she did upon arriving there, Arianna is a little to wiggly to ride with me holding her. Kenna was all smiles and it made me remember just why I love being a mom. I thought back to when I was young and all the things I wanted to do when I was a 'grown-up'. A doctor perhaps, maybe even a lawyer, or travel the world and discover some part of ancient history that could change the future. But that all seems to trivial to what I do today. I am a healer, a kiss can do wonders for a bump on the knee. I stand up for and fight for those that can not do it for themselves. And I travel the world in my own home, the couch can become many things, like a boat, a fortress, even an airplane. It can take us to far off lands to fight Dragons and rescue those in distress. I have become a horse that carries my young princess to find Prince Charming. I have found the Tickle Monster, it lives in my hands!!!
For all that my little wonderful children have helped me to become, I can not begin to express the joy that fills my heart. I will forever be taught by them, and I can only hope that in some small way I can teach them the simple joys that do not come by way of money and gifts. That true joy and happiness comes from within, from what we do for each other out of love.
Although I have my days when it seems Kenna is trying to push me over the edge of control. I have to remind myself that she is also trying her own wings, seeing just how high she can soar without my hands holding on to hers. She has had to grow up very quickly, and alot of it has been done on her own, since I have to spend alot of time doing some much for Arianna. I hope she can see that I love her very much, and what I do for both of them is very selfless, that she will take that in to her life and character.

Now that is my deep and profound thoughts for the day! ;)

So here is the most recent medical stuff that has been going on with Miss Arianna, she really has been a good girl this year.
She went in on Feb 19th for the 4 gland Botox, ABR hearing test, ECHO, and tear duct probing.
The botox is now just starting to work, and she has less spit to deal with. Her hearing has not improved to a level that the docs like so we will be trying hearing aides(and a big hugs of love goes to Erin and Zar, they gave us Charlotte's ears). Her tear drainage system is not even there in her left eye, and they opened up the right one.
We went in to see Cardio on March 2nd, and her doc feels that her ECHO looked good and to just keep the course we are on.
She also got her Synagsis shot that day, two pokes at the same time to make it pass quicker, she screamed in her own way, went blue in the face.
Next week we go back to the eye doctor and go in on the 13th for a CT scan to see if her brain can even process the input from the hearing aides.
Then the next week it's back to ENT clinic for more check-up's.
I can't say that I love all the traveling to the hospital, I just wish we could do it all in one day, it never works out that way.
I am truly grateful that Arianna has been healthy, we haven't even had to go in to her Peds office for anything more than a pimple like bump on her skull incision line, which turned out being psuedomones(sp), something you get from being in a hot tub, who knows how it came to be here but Kenna has some bumps to. We got that under control quickly.

I am also getting things ready for Kenna to start Kindergarten, that came upon me fast, I can't believe that she is 5 1/2, time flies to quickly.
Kenna and I have started "working-out" together, just a couple of goofballs dancing around the room, but we have fun doing it. And I have been helping Lacey with Jaxson's Blankies for Babes, I like to crochet and it is nice to do something for others.

So that's it in a nut shell, I will try to keep up in between all my other stuff.

The "Greatest" Grandma

This is about a month late but I wanted to share a very happy birthday with everyone. Matt's Grandma is just about the most wonderful woman in the world. She just celebrated her 89th year, and shows no signs of slowing down. She loves to play with all of her 30 some odd great-grand children. Kenna loves to visit her apartment, she has cool toys and always gets down to the floor to play with the kids. Arianna finds her way to kicking over the plants, but Grandma Ray just laughs and says, 'if she doesn't kill them, I probably will'.

I took this picture one evening when Grandma Ray and Grammy stopped by to say hi to the kids. It shows just how young at heart Grandma is.

Gotta Love a Gal with Spirit!!!

Happy Aniversary

Matt and I celebrated our 12 year aniversary on the 26th. I am now just getting around to posting cause I have been sick as a dog. We plan to do something to celebrate when we are all over this cold.

So, wow, I really can't believe how quickly the years have passed. I married a wonderful man, and he became a great father. I can only hope he feels the same.

Love ya tons husband!!!

Angel Charlotte

Our sweet friend Charlotte left us to be with the angels this morning. She got sick with RSV and it took her quickly. She was suround by her family when she passed, she will be greatly missed.

We came to know her and her wonderful parents through SOFT, Charlotte had a rare genetic disorder, Trisomy 16. She would have celebrated her fourth birthday in June. Arianna and Charlotte loved to play together, and pull eachothers oxygen out of their noses, who could really get upset when they were playing.

Our hearts are so very broken, but we know that she is now soaring with the angels, free of the limitations of her body.

Please pray for her family.

where do I sit and play mom?

So Arianna, with help from Kenna, has broken her swing. Granted the swing was not built to hold a 30 lb 2 year old, but I had hoped it would last a bit longer. Kenna was helping it to move, gave it one big shove too many and well now Arianna can lay back and touch the floor with her head. She is now hanging out in her wheelchair, cause I have nothing else to put her in. I think she is tolerating it for now. I just wish there were more seating options for her, the swing kept her entertain with its lights and music, they just don't make them for kids. Matt says he will start working on a design and then build one that will work for years to come, and use parts of the old swing, ie lights and music, he just can't get to it fast enough for me.
Question? Why is it that my kids will not nap at the same time? If Kenna just so happens to take a nap, which is rare, why won't Arianna take one too, or at least one longer than 1/2 hour. I would sure love to get in on the nap train once in a while.

A New Baby

So I am alittle late in posting this, but. We have a new little girl in our big family. Scott and Jesse welcomed Delilah Rea on Sunday(see their blog for pics, I have none). The very cool thing is that she was born on her mommy's b-day too. That makes two girls in our family to share such a special day. I thought it was pretty rare to have it happen to me with Arianna, and now to have Jesse and Lilah join our club is soooo cool.

Miss Me?

So sorry I haven't been updating like I should. I have been so crazy lately, and have been without a computer for too long. Matt uses my laptop for work and has had it for 3 weeks, but is now done with it. I have been busy with the house, we are trying to sell it and I have to work hard to keep it pretty and clean, not an easy task with miss Kenna.

We had an outing with the Ruggs last week, went to the Dino museum at Thanksgiving Point, the older kids had a great time, Arianna decided to take a nap in her wheelchair, not too much to entertain her. We also went to Shriner's Hospital yesterday to see an Orthopaedic doc, Arianna has some abnormalities with some of her vertebra, nothing can be done to fix them, but we will keep tabs on it. I am grateful for their help, it is provided at no cost to us.

I am glad this has been a quiet winter season for us, Arianna has stayed healthy and home. I hope it continues. I however have an eye infection, don't know how it happened either. I have been keeping the girls in the house, we have a really bad inversion and the air quality is soo bad, I believe they said it was 140 parts per mill yesterday, the legal limit is 33 parts per mil, gross huh. It can get deep down in your lungs and you can't even cough it out.

So in the house we will stay.