Thursday, May 28, 2009

Update on Elijah's medical stuff and BIG changes....

Well we have been traveling like crazy for the past two weeks. Elijah saw the Developmental specialist, pulmonologist, and cranial tech last week. This week we did the eye doctor. All of these appointments require travel, so I am tired, and broke. I actually spent almost $100 in gas in just three days last week!! My husband and I recently separated so now I am sort of doing this on my own. It is extremely hard! We have had to leave our home and are currently staying with relatives, I am so wanting to rent a small house that has come available! I want my children to have a nice home, I want things to be normal for them!

Back to Elijah, the developmental specialist said that Elijah is showing development appropriate for a 5-7 month old child in most areas. I didn't like to hear this since Elijah's corrected age is 9 months. It was also confirmed that Elijah has "low tone" mainly in the upper part of his body, this is why he can't sit up yet and why he hates to be put in his Bumbo. This low tone is caused by a brain injury he suffered either before birth due to the TTTS surgery or during or shortly after birth. No one has said Cerebral Palsy yet, but I'm waiting for that shoe to drop. Elijah's Pulmonology appointment went well, as did cranial tech. Elijah's eye doctor wants to do Botox Injections for his eye to see if that may help the crossing over time, otherwise it will require surgery because it can't be corrected with glasses.

Some days I feel so hopeful for Elijah and for my family's situation and others, like today, I feel like I could just plunge into the depths of despair, but I dare not, because there are so many little people depending on me.

Please keep me and my children in your prayers for our situation, medical and financial. My 3 year old is having such a hard time dealing with everything and is showing some anger, which I am sure is normal.

I know I have to keep my eyes on Jesus, not looking to the right or left, there are many days I feel so alone and like he is the only one who cares about me, my children, and our situation. Sometimes I just feel so lost in this world of staying at home, medical appointments, therapies, and now dealing with the sadness and loneliness of a broken marriage.
Please keep us in your prayers....

Monday, May 18, 2009

Birthday's and Well Visit's

Both of my oldest celebrated birthdays this month! They turned 14 and 3!

Big brother A. playing on his bike.

Baby brother in his new DOC band, enjoying his Baby Einstein Jumper.

Elijah and brother both had well visits last week. Over all Elijah got a good report. He now weighs 16 lbs 9 oz, that is a long way from 1lb 8oz a little over a year ago. His weight gain has slowed somewhat, so the doctor is wanting me to really push the calories. I should have no problem with that, thankfully there are no feeding problems and Elijah loves to eat. Elijah still seems to have an allergy to milk though, and that is to bad, considering the doctor wants him to drink milk with instant breakfast instead of formula. The doctor is also wanting Elijah to get more intense therapy so I am waiting on a call about referrals to speech, occupational, and physical therapy. Right now he is just getting one day a week at home.

Brother's check up went really well, he is healthy and developing good. Unlike baby brother though, big brother has to start eating better, he is a little in the chubby department. I think he is adorable, but I do want him to be healthy. All of this traveling and eating out has took a toll on all of us over the past year, I am getting ready to start a diet myself!

This will be a very busy week for us, and probably not a good week to start a diet. I have to take Elijah to three appointments this week, two of them will require an overnight stay and the other a 6 hour round trip. Yes, it is back to Cranial Tech again this week so Elijah's DOC band can be checked and adjusted.

Saturday, May 16, 2009

Pictures of Elijah's DOC band

After I painted and decorated.......

DOC band

Sorry I haven't posted in a while. There has been so much going on in my life, I may post more about that later. Elijah got his DOC band Thursday and is doing well with it. Every once in a while he will realize it is up there and try to pull at it. It really doesn't seem to bother him at all though. I am going to upload some pictures today so I will post them later.

I have such a busy week next week. Elijah has a appointment with his Pulmonologist on Tuesday and then with Developmental on Wed. Both of those appointments are in the same town, so that will require an overnight stay. Then I will be coming home on Wed. evening and leaving for Charlotte again on Thursday. Busy, Busy, Busy. I hate to complain but financially this is hard, and I hope my old van can make it, it has to last me for a few years, realistically I don't think it will. Unless they have been there I don't think anyone can understand that the financial hardships of having a premature infant REALLY begin once the baby comes home from the hospital and lasts for months, even years, depending on the child's condition.

Well I have to run now, lots to do, pictures coming soon though!

Wednesday, May 13, 2009

Pray for me... Pray for Others

Pray for MeWe 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.

Sunday, May 10, 2009

Happy Mothers Day!

I want to wish all mothers a very Happy Mothers Day! Last year at this time I was in Florida, unsure if Elijah would live to celebrate another Mothers Day with his mommy, and I was coming to terms with the fact that I would never spend mothers day with Lucas and David on this earth. I am so blessed this year to be home with my three boy's and to know that I have two precious angels waiting on me in heaven.

God Bless You and have a great day, be thankful for your children and never take a moment with them for granted.

We also celebrated my two older boy's birthdays today! Pictures coming soon! :)

Thursday, May 7, 2009

Just a quick post...

I was just looking at some blogs and reflecting. I have to admit, I have been feeling sorry for myself lately. Yes, it is horrible that I have lost two of my children, it is hard to have a sick child, it is a pain to do all the traveling we have to do on limited finances....

But, as I read some of the blogs I have been following I realized something that I have known all along, it could be worse. Elijah could have feeding problems, he could have cerebral palsy, be blind, deaf, you get the point. My other boy's are healthy and happy, there are so many children suffering out there right now. Right now my children are safe and warm in their beds. They are not in the hospital, they are not hungry, they are not homeless, they are not lost.

I think of all the missing children out there, I don't know why this happens. I keep thinking of my little boy, how I would feel if he was out there and I didn't know where. How horrible would it be, not knowing what is happening to your child, not knowing if he is scared, if anyone is comforting him.

This world we live in is so evil, I believe Jesus will come soon. I think the only reason he hasn't came back yet is because he wants to give everyone one more chance, one last chance to accept him and accept everlasting life!

I have saw remarks made as I surfed the internet the past couple of days, I beleive they were made by the same person, I don't remember how it was phrased exactly but it was something to the extent of :
"It bothers me when people attribute something good(like surviving a car crash) to God, who do they think caused the crash to begin with"

I don't know who is writing this and I am sure a lot of people feel this way, God have mercy on them is all I can say. If I could talk to them I would tell them this: "yes bad things happen in this world and for reasons we don't know God allows them to happen, and we know there is great evil in this world, but I don't know how anyone makes it through the bad times without the love and grace of God and Jesus Christ. When I was stuck in Florida for four months, watching two babies die and one suffer and fight for his life, God was my strength and he comforted me like no one else could".

As for the obvious non-belief in Gods ability to perform miracles, I truly believe that often God intervenes, there is a reason for everything that happens, I have seen God move in Elijah's life and make things happen that seemed impossible. Elijah's medical records show multiple diagnosis of cardiomyopathy, but during his last Cardiology appointment when that doctor said "I don't know what the other doctors have been seeing, but he has perfect heart function", I knew that God had answered many prayers and healed my child. You can read about his healing in this post: Elijahs heart

I know I couldn't bear to exist in this world without Gods comforting spirit and his love. I know when I pray that every prayer is heard. Most of all I know that the only son of God suffered and died for me and for everyone else, even for the person who wrote that.

Wow, I meant for this to be a short post! What I mainly wanted to say is that I need to quit complaining!

"God forgive me for complaining, I am truly thankful for all you have done for Elijah and for my healthy boy's, I ask for your continued protection on my children, I ask for your touch for the children whose blogs I follow and that you bless and protect all chidren tonight, those who are sick, alone, afraid, be with them Lord and comfort them, give them peace and hope" In Jesus' name: AMEN
This I recall to my mind, therefore have I hope. It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. (Lamentations 3:21-25)

Good Night and God Bless! :O)

Hi/Lo Thursday

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.

My Highs:

The sun keeps peeping out today, Elijah is still doing great, my salvation and knowing that I will see Lucas and David again! Elijah gets his DOC band next week to help correct his plageocephaly. God is great!

My Lows:

All this rain is getting me down and yesterday was sort of a sad day, it marked one year since Lucas left us.

The trips every other week to NC is going to be difficult, not sure how we will manage financially, not to mention we have to also travel for development and pulmonology this month which will be a overnight stay.

I am thankful my husband is working, but with me being unable to work right now and with my husbands huge pay cut we are struggling to make ends meet.

Wednesday, May 6, 2009

A sad anniversary...

Today marks the one year anniversary of out little Lucas going to heaven. Just like with the anniversary of Davids death back in April this is a bittersweet day for us. I am sad that we are missing so much with Lucas, his first birthday, his smile, and that his brothers will never know him on earth. But, I rejoice, Lucas is celebrating one year in heaven today. One year with our Saviour. I often wonder if babies grow in heaven. If I go to heaven when I am a old lady will I have grown children waiting on me, or will I have sweet babies? Only God can know this but I like to think I have babies waiting on me, not only the two boy's I lost last year but the ones I lost even before we had the chance to know if they were little boy's or girl's. My personal belief is that they will be babies, simply because of the wonderful dream, I dream I believe was sent to me by God, a dream that gives me great hope, no matter what happens to me in this world. If you didn't read my blog about My dream please do! During my pregnancy with the triplets and the early NICU days I did a MySpace blog. I plan on somehow linking that to this, so you can read the story from the beginning. Right now I am going to copy the post that I wrote a year ago today, I wrote this from my hospital bed, as I was in the hospital again from the blood clots in my lungs:

Tuesday, May 06, 2008 11:55 pm
Very sad....
I just wanted to let everyone know that our little Lucas went to heaven earlier this evening. While he passed he was in the arms of myself and his daddy. I know he was suffering greatly and that he is now in the arms of the Lord. As he passed there was such a peace in the room and I could feel the presence of God all around me. I know he went from our arms to Gods arms. I believe God took him home because he already had suffered so much and he fought such a brave fight. He had a severe brain bleed from birth, had he lived he may have been severely handicapped maybe blind and/or deaf. God took him home where he will be a happy healthy child and I know I will see him again, along with his brother David. I want to thank the Lord for giving us our Lucas for almost a month, I know it was in God's will that he go back to be with him. Thank you all for your prayers, continue to pray for Elijah, he continues to improve but it is such a long road. Once again Thank you all for your prayers and thoughts, I will continue to update on Elijah on here.

I have spent today with my little guy's. We had a great morning. I was finally able to take my toddler to the library for story hour. He had so much fun. This is something I have been wanting to do all winter, but couldn't risk taking Elijah out around a group of children, he would have most likely caught RSV from one of the little tykes!

Elijah all smiles at the library!

Enjoying a craft, and puzzles!

story time

Yes today is a sad day, but I am blessed to have my three boy's here with me, and my many children in heaven. Most of all I'm blessed because I know my Redeemer, and I know that because of him I will spend eternity with my children!

Tuesday, May 5, 2009

Laughter Lives Tuesday

Laughter LivesThis post is part of "Laughter Lives! Tuesday" on the Riggs Family Blog. Check our their blog to read everyone elses"Laughter Lives!" posts.

My Laughter Lives:

I can't believe I am posting this, I can't believe my son did this, but it is funny.

My toddler is now wearing his "big boy" underpants now. This morning after he woke up he yelled at me to take him to the "potty". I have a gate in the door of his room so he won't wander the house at night and fall down the stairs. I said "mommy will be right there, hold it for just a minute". Well I got sidetracked with the baby, I rushed to his room, sure that he had all ready had an accident. I was surprised that he was still dry. "Good Boy"! I said. "Now lets go to the potty". He says, "It's okay mommy, I all ready pee pee in my truck". Sure enough he had "went potty" in the back of his toy dump truck. I hope this hasn't started a new trend!

Another funny story, my toddler is just plain funny!

My 13 year old was being real whiny on Sunday afternoon because he didn't want to go back to church. My toddler walks up to him in this midst of all of this whining, places his little hand on my older sons head, and begins to pray for a healing loudly and with feeling, ending his prayer "in the name of Jesus Christ, Amen". My older son was so surprised that all whining immediately ceased! God does answer our prayers! :O)

Me and my funny guy!

Please comment! :O)

Hi everyone, it is so exciting to see all of the states and even countries represented that are starting to visit my blog. If you have time I would love for you to leave a short comment, especially if I may know you, so I can put people with places, and even if I don't know you, I love to make new friends. Also take a few short moments to become a follower of my Blog, just click on the follow me button in the sidebar and then check back often for updates.

Monday, May 4, 2009

Not Me Monday..,.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Well this is the first time I have tried this so here we go....

I didn't just turn on "Go Diego Go" and give my almost three year old son some fruit snacks because he was driving me CRAZY, not me, I would never do something like that!

I didn't get off the wrong exit while taking Elijah to a city we we have been to every month since August for medical appointments, I didn't decide against getting back on the interstate and travel several city blocks to find the road I needed to be on, I wasn't 2o minutes late for the appointment, I didn't tell the secretary that I got lost because I had no idea where I was going, nope Not Me!

I didn't also get us lost in Charlotte, AGAIN, by making the same mistake the last time we went there, Not Me!

I didn't blame my husband for the above mistake in Charlotte even though I was driving, no not me, I would never ever do something like that!

I didn't spend money on acai energy boost yesterday to try and get some energy and lose some weight.

I'm not starving right now, no not me!

I didn't just put a pizza in the oven either!

I didn't for some strange reason go around the house the other night and take pictures of everyone sleeping because I was bored, and them post them on my blog, nope not me!

I never let Elijah sleep in his bouncy seat...

I would never let my toddler go to sleep with a sippycup, not me, I wouldn't do that!

I didn't let my husband fall asleep on the couch and take his picture, not me....

I didn't leave him there either, no I'd never do that! Not me! :O)
I definitely would not post above mentioned picture on my blog knowing my husband will kill me! Not Me! :)

Saturday, May 2, 2009

DOC band coming soon....

A picture of a DOC band

We had our appointment with Cranial Tech on Thursday. What was supposed to be a quick appointment to have digital imaging done turned into half a day. Elijah had a problem with the stocking they had to put over his head to get the pictures done. He had an even bigger problem when they had to hold his arms by his sides. That is one thing he doesn't tolerate. So, he wiggled and he screamed for what seemed like forever. He was very upset. The therapist said that she had never seen a NICU baby who would tolerate being held down. So what ended up happening was this, they had to do it the old fashioned way. They made a cast of his head, guess what, you guessed it, he didn't like it! It was a exhausting day, we got back home at 11pm. Of course we didn't get out of the office until 5pm. Then we were in Charlotte rush hour traffic. It took us an hour to get 10 miles, very frustrating when you are looking at a three hour ride home!

Elijah will be getting his DOC band on our next trip to Charlotte, week after next. Then we will make a trip every other week. Sprinkle in a few trips to Roanoke and that is going to be A LOT of traveling. We have two appointments scheduled in Roanoke this month, with a stay at the RMH likely.

With my husbands BIG paycut(more than half of what he used to make), it is going to be really hard, almost impossible. I have come up with the idea of having a yard sale to try and raise some extra money for travel! I know God will make a way, he always does! :O)

As soon as Elijah gets his band I'll take some pictures and post them, I have a feeling, he's not going to like it!

Friday, May 1, 2009

Do the 10/10/10 for me!

Dear Family & Friends:

This economy is tough and we all need to watch EVERY dollar. We understand. That’s why I’m asking you to please consider helping the March of Dimes by giving just 10/10/10:

10 minutes – Go online to and register as either a walker with my Family Team or as a supporter of my team.
$10 – Donate just $10 when you register.
10 Friends – Forward this e-mail to 10 others, encouraging them to please help the March of Dimes this year.

Were not asking each person to give a lot, BUT WE DO NEED a lot of people to each give a little. AND JUST SO you know where your money goes, click here to see:

THANK YOU so much for helping! There is no such thing as a small contribution. ALL our dollars work together to save babies from prematurity and birth defects!

THANKS again!

Denise Privett