I noticed that I have not updated in a month, that is far too long. Being that I don't have a computer or Internet at home I don't get many chances to do so.
This is what has been going on.....Arianna is doing well on her new neb meds, her lungs look the best they have ever been in her life, amazing. Her heart is looking good. I came down with Strep last Tuesday, and was down for two days. On Thursday I felt better and thought I would do some laundry. I walked into my scrapbook room after changing the loads and stepped into squishy carpet. Our water main broke. Two days without water. Then Kenna came down with strep on Saturday and Arianna followed on Sunday.
It has been busy and crazy in our home, I wish i had more fun and exciting things to tell you all.
Please pray for Lilly our newest Trisomy family member.
Tuesday, October 19, 2010
Monday, September 20, 2010
Happy Brithday big girl
My sweet Kenna turned 7 yesterday, and lost tooth #7. can't believe the years have gone by so fast.
We had multiple parties. one with Matt's family last Sunday, one with her friends and cousins on Saturday, and one with my family yesterday.
Kenna asked me if we were celebrating her birthday tomorrow too? I told her that once we celebrate on your birthday date you don't get any more parties or gifts. But my sister put gum in my gear by forgetting her gift for Kenna, so I guess we will celebrating again!
I made her cake yesterday, from scratch, it was yummy. Who knew cakes didn't have to come from a store or box.
I love this kiddo very much and am so happy she is mine. She has given me so much joy, as well as thunder from her strong heart and temper. I couldn't ask for more!!
We had multiple parties. one with Matt's family last Sunday, one with her friends and cousins on Saturday, and one with my family yesterday.
Kenna asked me if we were celebrating her birthday tomorrow too? I told her that once we celebrate on your birthday date you don't get any more parties or gifts. But my sister put gum in my gear by forgetting her gift for Kenna, so I guess we will celebrating again!
I made her cake yesterday, from scratch, it was yummy. Who knew cakes didn't have to come from a store or box.
I love this kiddo very much and am so happy she is mine. She has given me so much joy, as well as thunder from her strong heart and temper. I couldn't ask for more!!
She hates them....
So Arianna got worse since my last post. Her lungs took a turn for the ugly, and she got an ear infection while on anti-biotics. Her doc gave her two rounds of Rocefen and called her pulmo doc and cardio doc. Her pulmo doc added Tobi treatments to go along with her Vest, and increased those to 3 times a day. she is going to add pulmozyne treatments when we are done with the Tobi(only a two week round). Well this kid hates to have the mask on her face and to be held still for the 1/2 hour it takes to do Tobi, she yowls like a cat the whole time, I guess the benefit is that she gets more in her lungs while she does it. Then to be put in her chair for the Vest for another 20 mins, well it makes for a long hour. I have to get up at 5:30 to start all the treatments so that she can still go to school, and yes I kept her home for two whole weeks like the docs wanted. No more fevers and she is just ready to roll, loves to be at school. Glad to say that it has all been worth it and she sounds a ton better in her lungs!
My hat and heart goes out to all you moms of CF kiddos. I still don't know how you do it!
On a side note....A wild fire is burning in our valley, thanks to the effort and hard work of our firefighters only four homes were destroyed and no one was injured, well one fire fighter was bitten by a horse he was trying to move to safety. Send your prayers to those that are continuing to fight and those that have lost. I have many friends that live in the area affected, in fact we almost bought a house there, I am glad to know that they are all safe at this time!!!
My hat and heart goes out to all you moms of CF kiddos. I still don't know how you do it!
On a side note....A wild fire is burning in our valley, thanks to the effort and hard work of our firefighters only four homes were destroyed and no one was injured, well one fire fighter was bitten by a horse he was trying to move to safety. Send your prayers to those that are continuing to fight and those that have lost. I have many friends that live in the area affected, in fact we almost bought a house there, I am glad to know that they are all safe at this time!!!
Wednesday, September 8, 2010
Where to start?
Well, I am without computer and Internet at home so I am forced to visit the Library and use theirs. Which today i am to hold in my chuckle, I checked my e-mail and I have somewhere in the range of 300 unread messages!!! I will get to emptying that in time, most of it is junk. I do wish I could do this at home, you can only use the computers here for 120 mins.
Now to the kids. Arianna has been in school for a week, although she took two days off for an extended holiday weekend, she has a cold. I did however send her back today, she is 8 days out from her last fever and is on anti-biotic. I must say I hate Omnicef for what it does to her tummy, she has had me up every night for at least 2 hours. First it starts with a blowout of red poo, which I must clean up and do a clothing change. Then she wants to cuddle until the gurgling in her tummy stops. I am so worn out, but I don't sleep well during the day, Matt has been great to let me get into bed early.
We went in to she her eye doctor yesterday, she has had a really gooey eye for two months and the eye drops just don't seem to be helping like they once did. So the doc wants to get us into the plastic surgeon for eyes, and have him construct her some tear ducts and drainage system for her left eye. This sucks only for the fact that we have gone a whole year without any surgery and only an overnight stay in the hospital, I was feeling blessed and lucky. I can only hope this will be and in and out kind of thing.
So now for Kenna. She will be turning 7 on the 19th. I still can't believe how fast her life has passed me by. She is so grown up, but still likes to cuddle up with me. She is doing well in school and has gotten 100% on all her spelling test so far!! she is one smart cookie. We have horses that live next door and she loves to give them treats from our garden and is learning how to care for a horse. she hopes this will lead to a horse of her own(we'll see).
She has painted a picture of humming birds at flowers to enter in her schools Reflections contest, she can't be more excited and knows 'I will win mom, my picture is the best'. She is already a winner to me.
I know there is so much more that i should update on, but I can't seem to think of anything right now. Guess there will be another installment soon.
Now to the kids. Arianna has been in school for a week, although she took two days off for an extended holiday weekend, she has a cold. I did however send her back today, she is 8 days out from her last fever and is on anti-biotic. I must say I hate Omnicef for what it does to her tummy, she has had me up every night for at least 2 hours. First it starts with a blowout of red poo, which I must clean up and do a clothing change. Then she wants to cuddle until the gurgling in her tummy stops. I am so worn out, but I don't sleep well during the day, Matt has been great to let me get into bed early.
We went in to she her eye doctor yesterday, she has had a really gooey eye for two months and the eye drops just don't seem to be helping like they once did. So the doc wants to get us into the plastic surgeon for eyes, and have him construct her some tear ducts and drainage system for her left eye. This sucks only for the fact that we have gone a whole year without any surgery and only an overnight stay in the hospital, I was feeling blessed and lucky. I can only hope this will be and in and out kind of thing.
So now for Kenna. She will be turning 7 on the 19th. I still can't believe how fast her life has passed me by. She is so grown up, but still likes to cuddle up with me. She is doing well in school and has gotten 100% on all her spelling test so far!! she is one smart cookie. We have horses that live next door and she loves to give them treats from our garden and is learning how to care for a horse. she hopes this will lead to a horse of her own(we'll see).
She has painted a picture of humming birds at flowers to enter in her schools Reflections contest, she can't be more excited and knows 'I will win mom, my picture is the best'. She is already a winner to me.
I know there is so much more that i should update on, but I can't seem to think of anything right now. Guess there will be another installment soon.
Friday, August 13, 2010
So I met with the grandparents of Thiago, he is still in Uruguay. What a special and uplifting visit for us all. They fell in love with Arianna, and the grandpa couldn't put her down.
I feel such love and sorrow for this family, in Uruguay they are not getting the care and much needed surgery due to the fact that Thiago is not suppose to live. He has a cleft pallet and harelip that needs to be repaired, and they wont do it. I made some calls to our wonderful plastic surgeon, and they gave me the info needed so that the repair might be made by the Hershey Smile Foundation. The family will travel anywhere in S.A. so that it can be done.
I was able to send a few needed medical supplies with them, makes you feel good when you can help out, even in this small way.
I will post a pic of this cutie as soon as I have my computer back.
Pray for this family that them may get the care they need.
I feel such love and sorrow for this family, in Uruguay they are not getting the care and much needed surgery due to the fact that Thiago is not suppose to live. He has a cleft pallet and harelip that needs to be repaired, and they wont do it. I made some calls to our wonderful plastic surgeon, and they gave me the info needed so that the repair might be made by the Hershey Smile Foundation. The family will travel anywhere in S.A. so that it can be done.
I was able to send a few needed medical supplies with them, makes you feel good when you can help out, even in this small way.
I will post a pic of this cutie as soon as I have my computer back.
Pray for this family that them may get the care they need.
Tuesday, August 10, 2010
Looking forward to tomorrow. We are meeting a family for Uruguay, they found us online and are in town visiting family and doctors. The genetics doc that works with SOFT called me and asked if we could meet them. They have an 18 month old boy with Trisomy 13. I am hoping that they find what they need in meeting Arianna.
I will post pics of the cuties together when I can.
I will post pics of the cuties together when I can.
Sunday, August 1, 2010
Summer is to short and ever so busy. We spent a five day weekend at Starvation, camping with old high school friends. Matt and Kenna spent lots of time on the boat, Arianna and I only went out twice, but we still had a good time in the water and on the beach. I also took her for a ride on the tube behind the boat, she liked the wind in her face.
Kenna has been in swimming lessons three days a week since the beginning of July, she loves the water and is enjoying it.
Matt gave me a tandem bike for my birthday. We have a bike trailer so we hook it on and take the girls for lots of rides, again Arianna loves the wind in her face.
I took Kenna to Lagoon for her very first time on Friday. She is a brave kid. She went on the Bat, the Wild Mouse, and the Centennial Screamer. She also tried out the Lady Bug, sounds so innocent, but no, it lifts you up on a tall shaft and then rotates and drops, then up and down many more times. She said to me 'I tried it once and that is all I will do,I don't want to do it again I may barf'. Her very fav was the Jumping Dragon. We spent the whole day there, got home about midnight and then slept in till 10.
I had not been feeling quiet right for about a month, always exhausted, and very nauseated. Before you get to excited, no I am not pregnant. I went to me doctor, had lots of labs done, and found that I am very depleted in vitamin D. I am now on a high dose twice a week, and feeling much better. But then about two weeks ago I came down with a bad cough. Again I went to the doctor and I have bronchitis. They put me on an inhaler and antibiotics for a persistent sinus infection. My sinus' is getting better, but I am still coughing, and it hurts, sounds as if I am trying to get a lung out. I can only hope it clears soon.
Getting ready for school to start again, Kenna goes to first grade on Aug 17. Took her clothes shopping yesterday, good thing Grammy wanted to buy her some items. She picked out some very stylish outfits, made my realize that she is not a little kid anymore, growing up way too fast.
Arianna will begin school on the 23, not sure yet if school will be a full day for her or not, the school was still working on it. Don't know what I will do with myself all alone everyday, maybe get my scrap booking done!!
Kenna has been in swimming lessons three days a week since the beginning of July, she loves the water and is enjoying it.
Matt gave me a tandem bike for my birthday. We have a bike trailer so we hook it on and take the girls for lots of rides, again Arianna loves the wind in her face.
I took Kenna to Lagoon for her very first time on Friday. She is a brave kid. She went on the Bat, the Wild Mouse, and the Centennial Screamer. She also tried out the Lady Bug, sounds so innocent, but no, it lifts you up on a tall shaft and then rotates and drops, then up and down many more times. She said to me 'I tried it once and that is all I will do,I don't want to do it again I may barf'. Her very fav was the Jumping Dragon. We spent the whole day there, got home about midnight and then slept in till 10.
I had not been feeling quiet right for about a month, always exhausted, and very nauseated. Before you get to excited, no I am not pregnant. I went to me doctor, had lots of labs done, and found that I am very depleted in vitamin D. I am now on a high dose twice a week, and feeling much better. But then about two weeks ago I came down with a bad cough. Again I went to the doctor and I have bronchitis. They put me on an inhaler and antibiotics for a persistent sinus infection. My sinus' is getting better, but I am still coughing, and it hurts, sounds as if I am trying to get a lung out. I can only hope it clears soon.
Getting ready for school to start again, Kenna goes to first grade on Aug 17. Took her clothes shopping yesterday, good thing Grammy wanted to buy her some items. She picked out some very stylish outfits, made my realize that she is not a little kid anymore, growing up way too fast.
Arianna will begin school on the 23, not sure yet if school will be a full day for her or not, the school was still working on it. Don't know what I will do with myself all alone everyday, maybe get my scrap booking done!!
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