Friday, November 14, 2008

Unemployeed husbands are a BLESSING!

You wouldn't want your husband to be without a job - unless you have a baby in the hospital! So it CAN be a blessing in disguise... We had to check Finnie into Children's Hospital on Tuesday. She couldn't keep anything down and was getting dehydrated. We didn't really know how dehydrated until three different expert teams couldn't find a vein for the IV. Finnie literally turned into a pin cushion. It was horrible!! Finally, two anesthesiologists tried. They couldn't even get it in the jugular vein on her neck. They must have prayed at some point and ended up getting one to work at on her wrist. Poor baby - it made her even more miserable than she already was!

We think that her new medicine caused gastritis which wouldn't allow anything in her stomach - thus all the vomiting. We are still working on getting her to keep clear liquids down, then her medicine by mouth (which is now going into the IV) and then we'll work on milk. Once she can do all of these for 24 hours - she can come home!

You hate to stay in the hospital any longer than necessary cause people tend to catch something else and get even sicker! With her immune system suppressed I am a bit over paranoid!! So I appreciate those who want to visit us - but I would even more appreciate you not - hee hee!! Finn could use your thoughts and prayers however. And once we are home - Paul still needs a job!! Chat later... It's my shift!

Tuesday, November 4, 2008

A new medicinal adventure - -

Well - I am officially giving shots to my baby. I have been MORE than paranoid about this day and was praying it would never come. But it has and I have had to buck up and get brave! We started Finn on a medication for her seizures called ACTH. ACTH is a steroid hormone. It has to be given by injection twice daily for a week, then goes to once a day, then every other day. ACTH is in addition to her other medications. The hope is that it will knock out her spasms and then we can control her seizures with just one medication in the future. Some children even outgrow seizures altogether after having ACTH.

There are a lot of side effects to the drug(possible high blood pressure, facial weight gain, extreme irritability, lack of sleeping etc.) We really prayed about it and asked that if it was not right to put her on it, that something would prevent us from doing it. The cost of the drug is $28,000.00 a vial - total cost for the treatment could reach about $150,000.00. Our insurance covered it and when Paul was let go from his job, his boss offered to keep us covered with insurance until the end of December. So we took that as our answer.

The home care nurses came out three times to make sure I was doing the injections correctly. Even while I was shaking, I seemed to function. There is so much to remember while doing it - I hope I can keep it up and not hurt my little yummy Finn Finn. She hardly cries when she gets the shot. But she doesn't like being held down and that's when she cries. She has been more cranky and that's supposed to get worse - oh hooray!! Her face is supposed to swell up like Jerry Lewis but they say the crankiness will be more bothersome to us. Since it's a steroid, it keeps her hyped up so it's hard for her to sleep. Which means she will get more overtired each day and then none of us will be getting sleep. (Except for Angie because she can sleep through hurricanes, earthquakes and pretty much anything!) Her appetite is already starting to increase -and we all know she didn't need to put on any weight!

We took the Christmas card pictures last week(not that I ever get them mailed). My friend Cindy found Thanksgiving jammies and so we took pictures in those with her cute turkey clip made by my friend Jolene! I know I'll take more pictures through the season but if Finnie is as miserable as they say she'll be - we might as well have a few good pictures to remember the season!!

I am just grateful for medicine that is available and covered by insurance. It is a blessing that Paul is home right now to help with Finn and Angie. (He may not see it as that, but I do!) The job will come when it is supposed to but right now - we'll concentrate on our medicinal journey! Thanksgiving will be very different for us this year. The lessons we have learned are overwhelming and we are so thankful for so many things.

We are also staying up for all the election results tonight. All we know so far is that we have a new president! Wow - what times we live in. God bless you all.

Saturday, November 1, 2008

The best Halloween EVER - -

For me, Halloween would not usually conjure up warm fuzzies like Christmas. In the past it's been a holiday more of excitement, glitter, fake eyelashes and a lot of red lipstick. (I LOVE to dress up and be as crazy as I seem to be the rest of the year) But there's an exception to every rule. I can't remember a better Halloween. It had all of those cozy feelings of Christmas with all the surroundings of Autumn.

Angie was so excited to be dressed as her Grandmothers dressed in High School. She kept saying, "I feel like I'm really back in the past." She loved her outfit and was in the best mood. Finnley was happy and smiling. She took a nap before we started the evenings festivities and it kept her just plain adorable!

I found myself with a heart full of gratitude to the Lord and His grace for another holiday with my girls. When Finn was dying, I mourned for all of the upcoming holidays and events that she wouldn't be a part of. I was so sad to think that she would miss the holidays with us. But she's here. Thank the Lord - she's here. Angie gets to share all of these moments with a little sister who just loves her to death. They are so cute together and I can't help but think they have known each other since eternity began. We are so blessed...

Happy Halloween!!

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About Me

I am a mom of two beautiful girls. Our family has been greatly blessed by the Lord. His message of love and hope needs to be shared and my girls are a testimony of His plan for all of us.