Random thoughts and Elijah update...

I know today is supposed to be wordless Wednesday, but I think I'll make an exception since I haven't updated in a few days. I'm sitting outside enjoying the sunshine and my view of the mountains. It is so strange, I have lived in the mountains for my whole life and took them for granted. Last summer, when we had to spend four very long months in the Florida heat I really longed for the mountains. I have a new appreciation for the lovely area I live in. There may not be a lot going on in my small town but it is a great place to raise kids and we have great weather! We may not have a big night life, but I feel like we live in mother natures playground, to bad it took me 32 years to realize it! :O)

Elijah's birthday party was a hit! We had a beautiful day, lots of friends and family, a grill, and birthday cake! Who could ask for a better first birthday party! The only bad part was that I lost my memory card to my digital camera? :O(

The kids are over their illness's, Elijah passed his swallow test. He is not aspirating and the therapist even suggested that I start some textures with Elijah, like graham crackers and puffs!

We traveled to Roanoke on Monday for the swallow study, a four hour round trip. Tomorrow we will make the 6 hour round trip to North Carolina, the insurance finally approved Elijah's DOC band. We should have that by mid May.

This swine flu situation is making me very nervous, especially with the amount of travel we have to do. My toddler constantly touches everything he comes into contact with. When we are out I'll wash his hands and then he touches the wall, the more I tell him not to touch, the more he is determined to touch. I also worry because my husbands job puts him into contact with a lot of truck drivers from all over the country. I just pray for Gods protection on my family during these scary, scary times!

Ups and Downs!

As I write this I am sitting out here in my yard enjoying this 85 degree day! Wow it is hot, I don't know how I made it in Florida for four months last year, April- August. I thought I would melt today. Earlier I was so excited. My old van needs some repairs, it needs brake shoes and something is wrong with one of the belts. My mom had called me to tell me that my father had spoke to a man that he knew who has a garage, this gentleman said that if we bought the parts he would look at it and fix it for free. After hearing this I was so happy, then I jump in the van to go order Elijah's birthday cake and do some shopping for his birthday party tomorrow and discover that the air conditioner doesn't work anymore. GREAT! I actually cried!

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)

Oh how I've grown...

This is the earliest picture I can find of Elijah, he is actually almost a month old in this picture, due to this being a "surprise" delivery 12 hours away from home, and the fact that I was hospitalized several times after the babies births with life threatening complications we were not able to get a lot of very early pictures of the babies. Elijah was actually fairly stable in this picture, right after Elijah's birth he was very ill and had to have a surgery that almost took his life. But thankfully God worked the first of many miracles at that time! I do have one picture the NICU staff took for me right after his birth, I am trying to locate it and I will post it as soon as I find it! You can see how small he is in this picture, imagine how small he was at birth, weighing 1lb 8oz and being 13 inches long!




Little Feet

Bigger Feet



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!

Insurance Approval???

We are still waiting on insurance approval for Elijahs DOC band. This is very frustrating! If you don't know what a DOC band is visit cranialtech.com
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!

"Pray for me....Pray for others"

We participate in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

Urgent: Prayers needed for Kayleigh

Please pray for Kayleigh Freeman and her family:

http://kayleighannefreeman.blogspot.com

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)

Poor, poor, me, lol!

Well a good thing is that Elijah is feeling much better, he is a little grumpy because he wants his baby food back, I am still waiting on a call about that referral for a swallow study, you would think that the pediatricians office would try and rush something like that when a one year old baby has been cut back to only formula thickened with rice. I'm confused about this anyway. Elijah has passed this study once before. Is he more likely to aspirate on baby food than formula?

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!