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!

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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!

Doing better...

Elijah is doing better now. The past few days he seemed to get worse, especially at night. On Thursday night I didn't sleep at all, I sat up and watched him. He was so stuffy, wheezing, and was breathing really fast. His hands and feet were turning blue again as well as his lips. I came very close to going to the ER, but I hate to expose him to those germs and to the hospital staff who don't really know how to deal with such a small baby with his unique circumstances. So I gave him a breathing treatment and watched him. I took him to the doctor the next morning. He had a ear infection. The doctor is afraid that he is aspirating his food, so we can't feed him anything other than formula until he has a swallow study done. That means more traveling. I just hope he passes the test!

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!

Pictures

Sleepy Baby!
Proud Big Brother...

Happy Baby!

Little man and daddy....

The Birthday Boy, one year old on Easter 4-12-09

Update and Hateful Insurance Companies

Elijah seems to be on the mend. We went back to the pediatrician today. He is still wheezing and having some problems breathing at night. So I am to continue breathing treatments and they have started him on steroids. Yuck, but maybe that will help with the breathing issues at night by reducing inflammation. Maybe I'll be able to actually sleep again someday soon!
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!

Poor Little Sick baby :O(

Breathing treatment time.
He likes the pacifier setting.

Look at my little red nose!

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)

4/12/2008

Happy Easter everyone. I am so thankful that my Saviour has risen! When I reflect over the past year I know I would have never made it without my Lord. A year ago last night I was laying in a hospital in Tampa, Fl. The only members of my family present were my husband and our (almost) two year old son. They were pumping me full of drugs, trying to mature the babies lungs, trying to keep the babies from being born. On the morning of April 11th a ultrasound was done, mainly to check on little David. David was the baby that was affected when my water broke, he was essentially partially born for almost a week. For a week David defied the odds. The doctors were amazed that this child was still holding on. On the April 11th ultrasound David still had a strong heartbeat. On the morning of April 12th our Lord decided to take David home. I named this child David, mostly because his strength reminded me of another David. A little boy who, by Gods grace, fought a giant and won. Some may say that my David did not win his battle, but I say he did. David is now in heaven, he will celebrate Easter with his brother Lucas, and with so many others who have left us, my grandmother's my papaw's, and all of those friends and family members who have went home, and most importantly with our Lord. Whatever plan God had for David had been fullfilled on April 12th 2008, I do not know what that plan was, but I will know someday. I will never forget this little warrior, and I know I will hold him again, and the next time I hold him his cheeks will be pink with life, and he will smile up at me.

OOPS, forgot wordless Wed.

Here are a few pics...

Elijah

a older pic of me, Brian, and Dillan on my graduation day from college

Elijah when we first brought him home!

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!

Pray for Elijah, he's a sick little guy....

Well we spent last night in the hospital. Elijah had a bad night on the night of the 7th. We sat up all night and yesterday I took him to the doctor. The doctor did two breathing treatments at the office, his oxygen Sat's were lower we would like so she decided to send him to the hospital. Elijah hasn't been in the hospital since his surgery in August. He didn't like it. I live in a small community, the nearest children's hospital is about an hour and a half away. Our little hospital is great, you couldn't ask to have more caring people taking care of you (for the most part). The big problem is that they don't seem to get a whole lot of pediatric patients.
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!

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illness and DOC band update...

From the Olan Mills photo shoot, I wasn't really satisfied with these pics...

This is cute,though I wished they would try to make him smile!


Little Elijah....

Giving baby brother kisses.....

Elijah is hanging in there with this illness. I took him to the doctor and he does not have RSV. He is wheezing so we are doing breathing treatments. It is unbelievable, but this is the first time we have had to do breathing treatments with Elijah. You would think they would be a common occurance for a child born with so many lung issues, but Thank God they are not!

Our two year old is on an antibiotic finally, after three weeks of coughing!

I am waiting to here back from Cranial Tech about insurance coverage for the DOC band that Elijah will be needing. When they call us we will have to travel back down there and they will take images of Elijah's head and send them off so the band can be customized for his needs, then we will have to go back the next week to pick it up. After that we will have to travel at least every other week, maybe even weekly for adjustments.

I would be lying if I said this was not going to be very hard on us financially. I am really thankful that gas isn't four dollars a gallon right now! Last year after I lost my job, was put on bedrest for the pregnancy, and after Brians layoff and his huge pay cut, our van was repossessed. Thankfully, I was able to buy a used van. When I bought the van it had about 89,000 miles on it and needed some repair work. We knew that we would have to use the van alot to travel to my medical appointments about an hour and a half away. What we didn't anticipate was having to take the van to Florida and then when we came home the trips to various medical appointments in Roanoke, Charlottesville, Johnson City, and now Charlotte, NC. I honestly don't think this van will make it much longer, it now has about 105,000 miles on it and we have only had it for about a year! It is needing some major work, I'm afraid to have it looked at because I am afraid of what they will tell me! We may be looking at the expense of renting a car for some of our trips to Charlotte. Since the trip was so hard on us last time I had looked into a Ronald Mcdonald House so we could at least rest before coming back home, just to find out that the RMH in Charlotte is still under construction. If anyone knows of a RMH or similar organization in or near Charlotte please let me know!

Since all of this has happened I have never Asked for any help, even when we were 12 hours away from home, thankfully we had the Tampa RMH which provided us with so many of our needs, and of course friends and family sent us what they could and I am forever thankful (you know who you are :) Most of these people were struggling as much a we were at the time. They don't know how much we appreciated the help and the nice gestures, they often brightened very dark and frightening days! The small country church that I attended as a child, and haven't been to in years even took up money for us from their congregation, that money came just in time to assist us in getting Elijah home! God has always provided for our needs! I am so thankful to everyone who has helped!

I hope I don't have to ask people for help with this situation, but I may have to swallow my pride. We are just thankful to have Elijah home and healthy, we are thankful that we have been able to hang on to our house, though I'm not sure how long this can last.

I just ask for prayers that God will provide for this situation as he has always provided for us! I may open a pay pal account and if anyone feels led to give a few dollars we will forever appreciate it! If not we still want your prayers!

God Bless!

Still coughing.....

Elijah is still coughing, now it seems like it is in his chest. If he is still coughing on Monday I am taking him to his doctor. We found out Friday that Elijah will have to have a DOC band. This is going to mean trips to North Carolina, weekly for a few weeks then bi-weekly. This is going to be very hard on us financially, but I try not to worry. I know God will provide! I'm so tired right now, but I will write more later on this. I am so behind in my online classes, but it is hard to worry about that right now! Keep praying for us!

More later! : )

Please pray...

Elijah is coughing a lot! It is starting to sound bad. We have made it this far without him being sick. I have been worried, in the past three weeks my husband, myself, and our 2 year old have been sick. I have bronchitis. I really DON'T want Elijah sick, I DON'T want him in the hospital again! Poor baby.

Please Pray!

Wordless Wednesday

The Three Stooges, my dad and two cousins!

Little man playing on his early b-day present....

Baby E. enjoying the fresh air, but not the bright sun! : )

Little man and daddy in Tampa at the Ronald Mcdonald House, mommy was in the hospital when this photo was snapped!

My little preacher man fell asleep with mommy's Bible!




My Handsome boy's!

Well almost wordless anyway!! : )