Wednesday, April 29, 2009
Friday, April 24, 2009
On the upside, the insurance did approve Elijah's DOC band, on the downside we will have to make 6 hour round trips to Charlotte, every other week, sometimes even weekly! Without an air conditioner, in the summer!
What a day! I ask for your prayers for this situation. Thank you! :O)
Thursday, April 23, 2009
Elijah's last night in the NICU, see how jaundiced he still is. Elijah had severe liver damage due to the IV HAL nutrition he had to stay on for the first 3-4 months of his life. Elijah had his first bottle about 3 weeks before he came home, he came home on August 6th at four months of age, his due date was August 1st!
Early days at home.
No more Oxygen! Elijah was able to get off his supplemental oxygen in early October.
Happy Baby! Elijah now!
We were supposed to have a reply from the insurance last week. This is so frustrating. It takes me back to the days when we were in Florida and trying to get the insurance to approve a transfer for Elijah, which of course if you have followed my blog or read the earlier posts, you will know they denied the request.
I would like to write more but I am currently trying to get my MESSY house ready for Elijah's birthday party here on Saturday. I will be sure to post some pictures!
Wednesday, April 22, 2009
And the Lord said, If ye had faith as a grain of mustard seed, ye might say unto this sycamine tree, Be thou plucked up by the root, and be thou planted in the sea; and it should obey you. (Luke 17:6)
Monday, April 20, 2009
I am also EXTREMELY frustrated with the insurance issue about Elijah's DOC band. It has been over a month since the initial appointment where we were informed that Elijah badly needed the DOC band, and that time was very important in this matter. After being told that our insurance "never" denied coverage for this we were told that coverage was denied. Then we are told the medical director of the insurance company was reviewing the denial and we would hear something by last Friday. Well today is Monday and when I call I get "we haven't heard anything yet, we'll call you as soon as we do", and of course I say "thank you for your time". When I wanted to say: "Well Then Do Something, Call them Now, Find Out What The Hold Up is, This Is My Baby's Head we are Talking About, This Is His Brain That YOU Said Would Not Develop Right if He Didn't get It, and I Don't Have Several THOUSAND Dollars to Get It For Him, I'll be lucky to have the gas money to get him down there for the weekly fittings!". I really wish I would have said that to them. Oh well, maybe tomorrow because I plan on calling them every day until I get a reply! Just like I will call the pediatrician back until I get the appointment for the swallow study. They better not tell me that the swallow study will be like in July or something, I doubt Elijah will live off of only formula until then!
I'm also VERY frustrated with the fact that I am trying to clean for Elijah's birthday party on Saturday and can't get anything accomplished. Maybe if I throw this computer out of the window, and then call my non-existent babysitter, maybe then I can get something done!
It really amazes me how little help we have been offered since this tragedy in our lives. Because losing two babies and having one in a NICU for four months with many medical problems is a tragedy. Being 12 hours away from home, family, and children during this time was a nightmare, it wasn't like I could leave the NICU and go home to my bed and my other children. I couldn't go to my church and receive love and support from my church family. We have been back home for 8 months. There have been very few offers of help. I am thankful for those friends and family who have offered help to us, you know who you are! It is true what they say about how when a tragedy strikes you "find out who your friends are"! I am of course thankful to God because even if everyone else deserts us, I know he will never leave or forsake us, and for that I am eternally grateful!
Well enough of me feeling sorry for myself, there is a lot going on in my life that I don't mention on here, though I might talk about it some day. I'm sure it plays into my pity party as well!
Pray for me and my family, pray for baby Elijah, because we are truly in need of your prayers!
Saturday, April 18, 2009
I am thankful that he did well last night and is doing well tonight too. I haven't had to give him a breathing treatment since yesterday! YAY!
Well I know this is a short post. I'm just so tired. I plan on doing a blog detailing our time in Florida with Elijah and his brothers. I am going to use the journal I kept in the NICU and the myspace blog that I updated during that time to help me remember! So keep checking back! I hope to start on that soon!
Thursday, April 16, 2009
Tuesday, April 14, 2009
I worked all night to finish a paper for my class, we went to the doctor and pharmacy today and here I sit in the middle of a "Very Messy House" and I am blogging! I will clean my house this week, I promise! LOL!
I am very upset, I have actually just been informed that Elijah's insurance has denied the claim for his DOC band. This after they have terrified me by telling me the following:
- My son's head will be deformed, his face is our of line, he has one eye and ear out of place, he'll be made fun of in school
- He needs the band to help with his torticollis
- If he don't have the band his skull shape will interfere with brain growth
Needless to say I am ready to do battle! Please keep us in your prayers. I hate to deal with these insurance companies, it takes me back to the NICU day's when they refused to fly my son closer to home and we spent four months 12 hours away from home, away from our children, without family, in a strange place!
Wow, I am upset!
Please pray, pray, pray, if Elijah needs this I want him to have it!
Sunday, April 12, 2009
You can tell how sick he was, and look at those little blue hands! It's been a scary week or so at my house and we are still not completely well. We go back to the doctor this week, say a prayer for Elijah!
Thank you and God bless! :O)
Friday, April 10, 2009
a older pic of me, Brian, and Dillan on my graduation day from college
Early days in the NICU
Alex enjoying time with friends and a cupcake at the RMH in Tampa, Fl! Those were some of the worse days of my life but somehow some of the most blessed days!
Thursday, April 9, 2009
The lab came to draw Elijah's blood, I had already mentioned that it was extremely hard to draw his blood. I just so happened to be down in the parking lot transferring my older son's car seat into my dads car when the lab arrived. My mother ended up being the one to try and help hold Elijah down to have blood drawn. It did not go well, my mother was extremely upset, and she let them know about it. When I went back up, I stepped off the elevator, the first thing I saw was my sister sitting on a bench in the lobby, she looked sick. The first thing I heard was a child screaming. The screams were so anguished and they sounded like a much older child. I looked at my sister and said, "that can't be Elijah" as his room was quite a distance from the elevators. My sister said that yes it was and that mom was losing it. When I went into the room there were three people holding Elijah down, he looked like a pincushion, he was bleeding from at least three places, and the lab tech was jabbing a needle into his arm, his arm was so hyper extended that I was afraid she was going to break it. My mom was livid! The tech finally got a little blood and ruled it to be enough, she was very impatient with Elijah. My mom said she had finally told her to quit hurting the baby and go get someone who knew what they were doing. Oh well, I hate that Elijah had to go through that. Then to add insult to injury Elijah fought the respiratory therapist when he was suctioning his nose out, so Elijah's nose started to bleed pretty bad. We are still getting clots of blood out of it.
I'm hoping we can weather the rest of this out at home, but I don't know for sure. The doctor seemed sure she would see us back at the hospital. She let me bring him home on breathing treatments. Right now I figure I had better get my shower, and pack up some stuff because we may have to go back.
Please keep us in your prayers!
Wednesday, April 8, 2009
Tuesday, April 7, 2009
Giving baby brother kisses.....
Saturday, April 4, 2009
More later! : )
Thursday, April 2, 2009