Tuesday, February 10, 2009

check out...

The video I posted on ELijah's carepage. I have tried to post it here, but it won't post.

IT IS INCREDIBLE, but SOOOO worth watching. I am pleading with you all to go check it out. Help fight a very large fight.

You can visit his carepage by clicking on this link:

www.carepages.com/carepages/EliPalmer

Sunday, February 8, 2009

Update and Happy CHD Awareness week

We are all beginning to feel better. Things are almost back to normal. I still have a pretty sore throat/cough. Elijah still has quite the cough but is just getting 2 treatments a day and back to eating and tearing up the place! Travis is now just on his asthma maintenece meds with a little cough still. Hannah is fine she barely even got a cold. She seldom gets sick. Jason is doing okay...still a cough, but better. I can TOTALLY understand now why Elijah quit eating/drinking and got so dehydrated. My throat hurt so bad that I couldn't eat much. Everytime I swallowed it just felt like it was ripping. It was awful! I am so thankful for the prayers.


Today is the first day of National Congenital Heart Defect Awareness week. Before our "journey" with Elijah began we had no idea what a CHD was. We had never heard of it before. The majority of our family had never heard of it, nor our friends. We are so blessed by God to have been chosen to be the parents of a CHD baby. Elijah (born with Hypoplastic Left Heart Syndrome or HLHS) is amazing. Any way, below is a little "education" for everyone. I hope you all will take just a few minutes and read through the information below and maybe pass the info on to help raise awareness and maybe it will help raise funds for research to help kids like my little boy.

Some websites you can visit are:
www.heartsofhopemi.org
www.jackofheartsfoundation.com
www.savinglittlehearts.com
www.med.umich.edu/mott/chc/patient_con_hyp.html
www.carepages.com (Elijahs page name is EliPalmer)
www.caringbridge.org

Here are some interesting/eye-opening facts:

Statistics from the March of Dimes

1. Congenital heart defects are the #1 birth defect in the US as well as the world and are the leading cause of infant death in the United States.
2. In the United States, over 35,000 babies a year (1 in 125) are born with a congenital heart defect.
3. Defects may be so slight that the baby appears healthy for many years
4. Defects may be so severe that they are in immediate danger. (HLHS is one of the most severe and occurs in 4 out of 10,000 births.)

Statistics from The Children’s Heart Foundationhttp://www.childrensheartfoundation.org

1. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
2. There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
3. In the US, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is 5 times greater than funding for congenital heart defects.
4. In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.

According to http://tchin.org/aware/facts.htm:

* Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.
* It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.
* CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
* Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
* Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
* Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

Tuesday, February 3, 2009

Update-

So I took the boys in to the doctor yesterday for a recheck and boy am I glad I did. Elijah got really bad Sunday night into Monday. While there he was given 2 breathing treatments, which didn't help him. He quit eating/drinking and became very dehydrated. He was very lathargic and glossy eyed. He was wheezing, and very crackely in his lungs and she said he had "rails" which all of those things are lingo for pnemonia. His O2 sats were pretty low (85ish) so he was immediatly placed on 2 liters of oxygen and he was transported by ambulance to U of M. It was so scary for me once the ambluance pulled in and it sank in how sick he was.
The hardest part though was the fact that Hannah was at school in Highland and I had Travis with me and he COULD NOT go in the ambulance with us. I went in to a panic. I had to VERY QUICKLY find someone to get Hannah off the bus and come and pick Travis up from the kids doctor's office. I called 10 people to try to get someone to come pick him up for me before I finally got my little sister who was at work in Novi to come. She had to cash out and clean up at work and come from Novi to brighton. Jason had to call a lady that works at Brighton Wendy's to come get him until my sister got there. It was so hard for me to put him in a total strangers car, especially with him still so sick and looking at me like "mommy, what is going on?" He was so confused. He looked so scared and I had to fight back tears so I didn't scare him more. I have never felt so torn about what to do in my life. Needless to say...through the panic and feeling of helplessness, Travis did get picked up (with meds, and nebulizer in tow) by my little sister (thanks Kel), and she sped home to get Hannah off the bus. They are safe at home with Daddy (and my Mom when he is working). Travis is getting steroids and treatments and doing okay.
So, we got here and Elijah got an IV, blood drawn, chest xray, nose swab for influenza, and RSV. He was so angry. He is positive for pnemonia, and RSV as of right now. Both are viral so no antibiotics...it must simply (lol) run it's course. He has been on oxygen. He isn't eating/drinking much and when he does he just looses it when he coughs. He is so sensitive and pukes so easy!

That is all I can think of right now. I am too tired to recall anything more. If I think of anything else, I will let you know. I just ask that you please pray for health for the boys. That Elijah will be able to maintain his oxygen sats, and that he can eat and drink and sustain his little body. We really need all of you to intercede for us...PLEASE????

Friday, January 30, 2009

Doctor's visit today for some sick boys!

Well, I just got home from the pediatrician office with the boys...I jinxed myself by saying we were having a healthy winter because now not only has Travis's asthma turned into a hefty cold, but now Elijah is sick also. What a bummer! He is coughing like crazy and stuffy. Because of all of Elijah's oral issues when he gets a cold/cough he cannot hold food/drink down and it is VERY difficult to keep him hydrated...so please pray for the boys for healing and also for comfort during sleep (that is always the worst for the cough). Pray that Elijah will hold enough fluids down to sustain himself.

Funny little bit of info...Elijah hasn't been to the ped office since mid November. So no one has seen him in a while. At the last visit he was 29 pounds. Well, at todays visit he weighed in at a whopping 34 pounds! I am telling you he is a TANK! The doctor walked in and took a look at him and started laughing. She though she was in the wrong room. She looked at me and said "Look at him...he is SOOOO fat! You have done good Mom!" SHe couldn't stop talking about how awesome he looked and even commented on the fact that she couldn't believe that he is still so fresh from surgery that his scar is still purple and he looks this good! Anyway my point is that it is so awesome to hear how good all of the docs thinks he looks!

Thursday, January 29, 2009

The news!

So we ventured out to U of M this morning feeling pretty good! We were runnning on time (which never happens in the mornings for us) and everyone was in fairly good moods. Travis went with us today. He had to stay home again today because his asthma is just still going hay-wire!

Despite the roads being awful today we did arrive on time. AS we are walking in I just feel my stomach just knot up...walking in there just floods the memory bank in my head and stirs up all kinds of emotions. We walk in without strollers or diaper bag just us and the kids hand in hand, past the infamous "big bird", to the badging station, and down to floor one-peds cardio. The looks on everyone's faces as Elijah walked in was just to die for! They couldn't believe that this was the sick little boy that was just there months prior. Needless to say his doc was VERY PLEASED! He was 35 pounds! The doc says "ummm, I think it is time to stop the pediasure. Time for a REGULAR calorie diet!" Seriously??? I couldn't believe it! His SPO2 sats's were 92-94% and his EKG was fabulous. They said that he has a great sounding heart and that is is a "very healthy fontan"!! Hip hip hooray!!! He is off ALL meds except a baby aspirin on Monday, Wednesday, and Friday. And the best of all...no check up for a WHOLE YEAR!!!

GOD IS SO GOOD!

Wednesday, January 28, 2009

The little peanut...

Or not so little anymore, has a cardiology appointment in the morning at U of M. Please just say a prayer for him/us tonight. I have had such peace over the appointment all month until today. I know Mr. Elijah is okay, I know he is fine! He is growing and eating so good. he looks great to me, but the "what if" has loomed in and clouded my mind today! I don't think I will ever get over this fear...it is always tucked back in the back of my head. There is always that lump in my throat when I ask myself "does he look blue"? Or if he has a period of throwing up, I get that ache deep in my stomach...these thoughts NEVER leave. But, I have learned how to manage them a WHOLE LOT BETTER since surgery in August. Anyway, enough of this sad syuff, just please keep us all in your prayers...we will need them tonight and tomorrow.

Elijah has not been to the doctor since early December! It has been so wonderful! I never thought that we would be so free from doctors and the hospital. For 2 years and 4 months our lives were CONSUMED by doctor's and it was so difficult for the whole family. So this break has been much needed and much appreciated by all of us. He has had a pretty healthy winter so far and I cannot express enough gratitude to God for that.

Unfortunately, it has been Travis that has been sick this year. He again is having problems with his asthma! This is the 5th time since November and his attacks seem to just linger. He has had 2 trips to the hospital over it. Poor kid! He gets really bad headaches and really itchy when he is dealing with them. I hate watching him struggle to breath and be in so much pain. And I hate the medication! It makes him so hyper and mean. He gets really overwhelmed by his temper and emotions.

Hannah is doing fairly well. She has remained really healthy also this winter. She normally does though. That is a real blessing for us and her. She isn't a great patient when it comes to the doctor and resting! She has developed quite the attitude lately I will say! She is really having a very hard time in school. The teacher thinks she has A D D. I had never really thought about it until this year. I have always just chalked her school "issues" up to being left handed. I really don't know what to do. She is very behind and we spend hours every day doing home work, which I think is horrible! She spends all day in school and then comes home and does homework for hours...most days until bedtime. And most of the time she just isn't getting it! Sometimes, yes it is because she is not "on task" as the teacher calls it, but I can see how hard the work is for her.

Jason and I are doing okay. He has a really bad infection in a tooth. He has an appointment at the dentist next week. We are still looking for a house. Other than that we are okay though... just wishing for Spring...I am not a fan of winter. I feel very couped up right now and it is bad for me!

Well, I gotta run. The laundry is calling (as always)!

Thursday, January 22, 2009

heat

we have it for now. We are going to try to keep this furnace going as long as possible. Some motor has decided to go out and it costed us $95 for the guy to walk in our house for 7 minutes to drop oil in the motor to try to get it running again and to tell us that the motor needs replaced and it will cost us $500 for the part/labor. He said it may last a little bit or it may not...we just have to wait and see...and he was quick to tell us too that they DO NOT accept credit cards-too expensive for them! I think they can afford it charging $95 for 7 minutes of work!

Oh so cold...

We woke up this morning to a brisk 50 degress in our house and the sound of our furnace at it's death! Our furnace (some part of it) has deceased! We have had a problem with it for about a month now but since the artic temps it has been on it's last leg and we have just been trying to use it as little as possible to maintain it...
We have a furnace guy on the way here in about an hour but we will probably have to wait on parts to come in if it is even repairable.
Please just say a few prayers for us...to not FREEZE to death, that this doesn't make the kids sick (especially Elijah), and that this repair doesn't cost us too much. I am so sick to my stomach over this...I just hope that we can get it fixed. The furnace is old and we live in a mobile home which puts 2 strikes against us!
I have decided that I really enjoy heat...working furnaces are good!

Thursday, January 15, 2009

A few ramdom's about our life at the moment...

I think that our bills may just swallow us whole! I just got our new gas bill and just cannot believe it went up another $50! December's was $100 higher than November and now our current bill (from Dec 15-Jan 14) is $55 higher...grrrr! This is crazy! We just need a little break in this weather. Between the constant snow storms to these now "ARCTIC" temps, I think our bank accounts just need to rest! I am really thankful that fuel prices came down at the pumps because I think we would be in real trouble if they hadn't!

Other than that...all is well in the Palmer household! The kids are all great! I kept them home from school today because it was so cold. At 6 am it was still -3 here and I didn't want them out in this crazy weather. If an egg can freeze in 10 seconds in these cold temps than my little chickies are too fragile for this stuff! I woucl have drove them but then that would have required me taking Elijah out in this and I just don't do that. I think they are getting cabin fever...especially Elijah, he never gets to go ANYWHERE! He brings me his coat and shoes every day and tells me "I anna go bubye too, Mama!" Poor baby! Someday Spring will get here! Elijah did have a nasty ear infection last week, but other than that we have all been pretty healthy for the most part. He will go back to cardiology January 29th for his check up... please say prayers for that. I have no worries about it at all. I know by looking at him how well he is doing. If I didn't know better, I would never believe he had a congenital heart defect. He looks great, sounds great, eats great, and has more energy than I would have ever imagined him to have.

We have some meetings coming up for all of the kids...to assess Elijah's speach again, for preparation for kindergarten for Travis and also a meeting with hannah's teacher/school counselor to try to figure out why she is struggling so bad in school. They think she may have ADD but I wonder if it has a lot to do with dyslexia from being left handed...not sure really. I just no she struggles in a lot of things to do with school and I want to see her excel a little more. If any of you have any experience with a left handed child , I would love your input!

We are getting ready to really start our house hunt...please say a few prayers for us. We really want to move so bad. Any of you know of any good mortgage companies?

Tuesday, January 6, 2009

AMAZED!!!

Hey everyone! Hope you ALL are doing well! I hope that Christmas was wonderful and that your New Year went well!

We had a great Christmas! The kids are so much fun to watch and to hear them talk about Jesus is so cool! We stayed close to home for Christmas celebration's this year. Christmas eve was spent at my parent's house about 2 minutes down the road...it was actually a beautiful night. Bot mof my sister's were there and my brother with all of the kids. It was so much fun...no frustration, no short tempers, no arguing...VERY ODD for my family, but such a relief! We had Christmas at home. My Mom and Dad came over to watch the kids open gifts which was nice. The kids were happy to have them here. Then we were able to spend a little time with Jason's Dad and step-Mom via webcam. We both got one before Christmas for that reason. They have not seen the kids in a very long time...if fact his step-mom has never seen Elijah. Needless to say, it was nice to hear the reactions to the kids. The kids thought it was the coolest thing ever to be able to see their Gran and PawPaw all the way in Texas! Christmas dinner was done here. Our house was so packed, but we had fun!

So the title of my blog is amazed...which now I will get into! Today, Elijah and Travis had an appointment. They both had height and weight measured and Mr. Travis is PERFECT in regards to other children his age. Elijah on the other hand is a little short falling in the 30th % range (which is better than the past when he was 10th%) and he was OFF THE CHART for his weight!!!!! Yea, you read that right...OFF THE CHART! They actually told me he needs to start slimming down a little. I think they thought they were going to have to pick my jaw up off of the floor! NEVER in a MILLION YEARS did I think I would hear that! My baby that has struggled his whole life is too heavy! That is CRAZY!!! I guess I am working to hard to get and keep his weight on...I guess God heard and answered that prayer for me. God is so wonderful! This is the last month Elijah will get his pediasure. No more bottle...no more special formula, no more extra calories, no extra meds....LIFE IS GOOOOOOOD!

Well, that is about it for now! I hope you get joy out of reading that tid bit of info about Elijah...I was so excited to hear all of it!! I hope the new year brings you all so much joy and more happiness than you have ever known!