Tuesday, October 9, 2012

Hoping

We are still not on oxygen!!  This is exciting as Abigail has struggled so much in the past with her lungs due to a bout of RSV when she was only 8 months old.  The down side is that her immunity is diminishing so she could take a turn for the worse at any time.  She wouldn't eat this morning, but I'm hoping I just ordered the wrong thing. 

It's been hard to adjust to a new hospital and all the policies and rules that come with any new change.  Some things I totally hate, but others make a lot of sense.  I just hate feeling like a rookie at this stage of the game.  On the 22nd of this month a new children's hospital will open here in Orlando and then we will go there instead.  Crazy that it will be almost an hour away but we are anxious to see it.  Especially after what I've seen here.  There are advantages in living so close to magic kingdom.  I know the picture quality stinks, but I thought I would upload these photos anyway.  I was so impressed with this castle and beanstock room in the hospital, I had to share.  Plus, Abigail is asleep so I am trying to find something quiet to keep me busy;)





Monday, October 8, 2012

Abigail was admitted

Sunday morning Abigail woke with a cough like a barking seal. We figured she may have Croup. The rest of the day she seemed to be fine and the cough even disappeared. Late in the afternoon, she started to slow down and just wanted to be held. I held her on the couch and she started getting sleepy at 4:00, which is not a good sign. Soon after, she began to feel hot. Hotter than normal and hot enough to take to the hospital. Anytime either twin gets a fever of 100.3 or higher we have to take them to the local ER. So, when we took her temp. it was 102.5. Our friend Morgan and his three girls watched our kids and waited for a more permanent sitter to come over as Kim and I made our way to the hospital.

As they accessed her port (stick a big needle through her skin) this time with her screaming and saying "no more!", I thought to myself, "don't they have enough strikes against them? Do they really need this extra suffering on top of everything else?" It is hard to watch them go through this month after month and realize they still have a long road to slog down. I know we need to be positive about things but, sometimes it is just too much for too long. Yet as much as I wish and pray for it to be different, we are helpless to take this away from them. We must go through it with them. I have wondered about the purpose of suffering in our lives. It is awful to go through or watch. In the past my first reaction when seeing someone suffer was to look away, try to ignore it, or somehow try not to think about. Now when I hear about someone's tough situation or see them go through something difficult, my heart goes out to them and I want to run and help but, many times I find myself unable to help because of my current limitations/situation. And so, I feel helpless but, in a way, I know what they are going through. There are many out there that may appear to have it easy or that things are not too hard for them. I don't believe that it is easy for anyone. Through the things which I have suffered, I have tried to become more accepting and patient of people's "bad days" because I don't how deep some of their struggles really are and I don't want to be the person that adds more weight to their heavy burden.

Sorry, for the side bar....back to Abigail - I stayed with her last night and Kim is taking the shift tonight. Abigail's culture came back that she has RSV, which scares me. The last time the twinnies had it, their lungs partially collapsed and they required heavy intervention at the hospital. They have permanent scaring from that run in with it. We pray that she will get better soon and be able to come home.

We feel blessed that our family has the health that it does. We were brought back to reality yesterday by the story of a family that has had a sad turn of events. The family had been getting chemo for their 10 or 11 year old son and then just recently had to start treatment up again when the cancer came roaring back. The 11 year old was going through a rough patch when the mom, from dealing with the stress of everything her son was going through had a heart attack and died. The father decided to keep it from his son (he had two other kids - one had died when she was younger and the other child is fine.) until the son was through this tough part in his treatment. The doctors ran some tests over the next couple of days and realized that the son's cancer was terminal and that he didn't have much time to live. The father, after just losing his wife a few days earlier, sat down with the son and told him that mom would be waiting for him on the other side and that he didn't have much time to go.....I don't personally know the family but, my heart goes out to them. What a difficult situation to go through. I hope my girls make it, though I don't if they will. I pray for peace to be with that family - they need it! There is much to be grateful for!

Friday, August 31, 2012

"Yucky Pee" and "Yucky Poo"

This is a picture of the first day of school for the twins! Even though Tasha spilled milk down the front of herself while eating her cheerios, she wouldn't let us change her outfit. Abigail kept pointing to the wet spot and saying "Yucky Pee!" over and over while laughing. The twins have become obsessed with saying that something is either "Yucky Pee" or "Yucky Poo". That goes for people, toys, diapers, animals, spills, clothing or when they just excited about something!

Anyway, they were both extremely excited about school. They want to be like their older siblings when they head off to school in the morning. They are supposed to take the bus everyday but, it has not come yet. The school said it will take a little time to get them on the schedule. In the meantime, they wait every morning to go to school and call out for the bus to come get them.

Tuesday, July 10, 2012

Fever

today we had a strange thing happen.   both of the twins had been acting normally, but we noticed that natasha felt warmer than abigail. she was running a mild fever.  we always have to go to the hospital with a fever, so we called oncology.  since the fever was low, they told us to wait 30 minutes and check again before we came in.  on a whim, we checked abigail 30 minutes later as well.   she was also running a fever.   this is the first time they have ever run a fever at the same time.   I took them both up to clinic which tends to be challenging with only 1 adult.   we had to access their ports, draw blood cultures, cbc's, and have a physician check .  their blood looked good and so they gave them an antibiotic.   here they are side by side with their green masks being weighed measured and having their blood pressure taken.   the next photo shows them together both receiving their antibiotics at the same time. This is a first .  now we wait 24 hours to see if they have any other fevers.  if they run a fever after the 24 hours, then we have to go up and do it all over again.   it's a good thing that my dentist was understanding about the appointment that I cancelled last minute to take them up to the hospital. 

please forgive all of the spelling errors and lack of capital letters.  I had to do all of this by phone before I got home, or I knew I would never get it done .  I have 2 other children at home with the stomach flu. 



Monday, July 2, 2012

(Abigail on the left, Natasha in the middle, Corban on the right)

(Natasha on left, Abigail on right)

It goes without saying but, we have been very busy lately. We wanted to update the blog with some recent pictures of the twins. The picture on the top shows how much weight Natasha has lost over the last few months. We have been trying to get her to gain weight by giving her the option to eat whatever she wants, but she usually only wants "fishy" crackers (Goldfish). She was delayed in getting chemo for about a month because her blood counts were not high enough. On a positive note, she is getting peach fuzz on her head because of the delay in chemo. Some people who don't know them mistake them for boys even when they are wearing pink. They always seem to smile through it all and they continue to help us have positive attitudes.

We also want to thank everyone for helping us reach and exceed the fundraising goal for the twins!!! Here is the link to the fundraising site we used: Youcaring.com - twins with leukemia  Thank you to everyone that donated, and to those that shared the links and videos on their facebook, email, and just telling their friends, family, and others about the twins. Also, thank you to those who have been praying for the twins and sending positive thoughts and energy our way. We have felt it!

The girls and our family were featured on KSL channel 5 on a show called Mormon Times on Sunday July 1. Here is the link to watch the story: Mormon Times Show  We would like to thank Irinna and Thompson (who came out and interviewed and filmed us). They were so patient and kind.

Friday, June 1, 2012

finishing

I got so busy that I forgot to report what happened after my previous post.  Natasha ended up in the hospital for 5 days.  Every day the plan changed.  From the beginning the thoughts of the doctors differed.  One told us that she could be infected with a serious bacteria and that her port (surgical line with access to her blood vessels) would need to be removed.  Another told us that it was probably just contamination and that it was no big deal.  Nevertheless, we had to stay in the hospital and just wait on the lab results.  I thought a hospital stay would be easier if the child was feeling better, but I was wrong.  Trying to entertain Natasha was so hard!  She felt OK and her numbers were good so she didn't want to just sit in a bed. Abigail came up some of the time to help entertain but it was stretching my abilities.   
 I managed to convince the doctors to let me take her to the hospital play room.  What a blessing! She had to wear a mask but it saved us both from frustration.
 After a week of ups and downs we still had no answers.  We only knew what antibiotic was working best on the bacteria.  Ironically, it was the one that she got the first night we took her to the E.R.  We were finally released with a week of at home IV antibiotics.  Whew!  Dodged a bullet!

Thursday, May 31, 2012

Video

We made and posted a video of our twins' journey so far on youtube.  The link is:  http://youtu.be/zmFOg7SpFas

We also have a fundraising site at www.helpourtwins.com 
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