Count Your Blessings

name them one by one.........

Christian


Dakota


Eli


Faith


and Brice (I never have any pictures of him well or me for that matter)

Baking Bread

Dakota and Faith have some sensitivities to fructose. So they have a hard time with fruits, fruit juices, some veggies, and high fructose corn syrup. It makes Faith look like she has coffee grounds in her diaper. Since almost anything store bought has high fructose corn syrup in it at some point it just becomes cheaper and better to make it homemade. Bread is one of those things and amazingly enough Dakota loves the bread more homemade. But as I (like so many other parents) just trying to get our chores done we forget that they really can help us and really enjoy it. So I thought it would be fun for them to help me make the bread. I was lucky enough to find a bread machine at a garage sale the other week. I already had one, but wasn't thrilled with it to pieces and knew if I was going to take on this new task of making something we eat all the time from scratch I knew I MUST love the bread machine. Some would ask why do you need a bread machine. I have four children two of which are special needs and that should be explanation enough. So here we are making bread.

Let's Get Started


Say Cheese
(Can someone tell me if their almost 4 year old smiles like this?)



Dakota's Turn


Eli's Turn (with mommy's help of course)


Yummy It's Done


It seems to me that our growth with God is like making bread. God adds things to our lives to make us grow and in the end we get to enjoy a fuller life with Him.

The Dentist

Back in January when Eli was in the hospital after his heart surgery, his surgeon asked if Eli had been to the dentist yet. Then he told me how important it was for Eli to go to the dentist and that he maintain oral health. If he doesn't his valve can be damaged even more will have to be replaced that much sooner. It can also cause further issues in other areas of his heart. By chance Dr. M's wife is a Pediatric Dentist. For me the more doctors know and understand my children and their medical issues the better. So if his wife is in the medical picture too that's seems to be a bonus because I can fully give them permission to talk at home. So today was the day of the appointment. And it went great in my terms. The kids squirmed. Dakota almost got sick when the put stuff in his mouth (typical Dakota). Eli wouldn't let them touch them. But their mouths look great. Eli will have to have braces when he gets older and we will have to watch for the need to pull adult teeth to make room. But again their mouths look great. We have a few areas to work on (I'm glad I got the dental flossers for them for Resurrection Sunday), but all in all a good appointment.

I'm not good at taking pictures so here they both are with their balloons, stickers and new toothbrushes after we got home.


But what did I learn from this appointment? Never take them both at the same time. They each needed too much help getting through the appointment. So in 6 months when we go back, I will be making their appointments on seperate days.

The Calm After The Storm?

So I haven't updated since before Eli's surgery and I meant to update right after, but I kept waiting for the follow-up appointments. Then I waited for Dr. C to either give us good news or bad news. So far really we've gotten neither. This kind of makes each appointment difficult because I don't really have positive things to go off of. We do know that his aorta is recoarcing. It's not at a place to go back to the cath lab yet, but it's something we need to be watching and will eventually have to address. He thinks it might have gotten just a touch smaller than his last echo, but again not enough to warrant the cath lab. We think they may be ready to do a stent (they have been talking about it since he was a baby) when they do have to address this since he is older and bigger. We will also be going to neurology because we think Eli is showing signs of brain damage from the heart/lung machine. I have a hard time talking about specifics of what he's doing or not doing. Some of the things I want to talk about or people ask about and I tell them and they attempt to be really positive. But "being positive" doesn't get us anywhere. Having faith is different than being positive. But people have a tendancy to lump them together sometimes. Having faith means knowing that even in the worst possible circumstances God WILL get you through it. It means trusting HIS plan and not your own. Even when that plan means the worst thing you can think of. God WILL get me and my family through this, but not being able to see the big picture that He does is really hard. I think that's harder for me than anything. So as I mention the brain damage and going to neurology it's hard for me to deal with the thought that my poor boy may be suffering something like this. And that as he has more surgeries it could get worse and there is nothing I can do and we have to go through the surgeries. Again "being positive" will get me no where. Having faith will even if it means the worst. But this DOES mean PREPARING for the worst (at least mentally). It means thinking about it, talking about it and coming to terms with it. All parents have these feelings as we see our kids go through these things. Some talk about it and some don't. Some wear their emotions on their sleeves and some don't. I personnally wear EVERY emotion I have on my sleeve. It's quite obvious how I'm feeling. I don't always want to talk about it, but sometimes I do. However, I feel like nobody understands so I stay silent.

As I learned in my ladies bible study this last session staying silent stunts your growth as a follower of Christ and does not help encourage others in their walk. Staying silent also prevents people from knowing exactly how to pray for you. So this is something I'm trying to work on. Talking about the difficulties even when I don't want to. Satan is trying to get me offended at others though. So please please pray for me as he throws his darts at me.

"Great peace have they which love thy law: and nothing shall offend them." Psalm 119:165

"But the tongue can no man tame; it is an unruly evil, full of deadly poison." James 3:8 (God definitely thought of me when He wrote this verse.)

He wants me to fail. But through Christ I will succeed.

"Forbearing one another, and forgiving one another, if any man have a quarrel against any: even as Christ forgave you, so also do ye." Colossians 3:13

"There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it." 1 Corithians 10:13 (Christ is our way to escape, but we MUST reach our hand towards Him. He is already reach towards us.)

"Recompense to no man evil for evil. Provide things honest in the sight of all men. If it be possible, as much as lieth in you, live peaceably with all men." Romans 12:17-18

So my hope is that this blog will be my outlet. I pray I can put my emotions and feelings here to speak when I haven't the strength and encourage others through our trials and tribulations. To allow people to pray for me when I'm struggling to speak. I pray that God can use me and my children to glorify Him and His name.

Hut On Fire?

A dear sister in Christ (thank you Mary Ann) sent me this story.

"The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming.
Exhausted, he eventually managed to build a little hut out of driftwood to protect himself from the elements, and to store his few possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out, 'God! How could you do this to me?'
Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! 'How did you know I was here?' asked the weary man of his rescuers. 'We saw your smoke signal,' they replied.

The Moral of This Story: It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because God is at work in our lives, even in the midst of our pain and suffering.

Remember that the next time your little hut seems to be burning to the ground. It just may be a smoke signal that summons the Grace of God."

When I sit and think about our hospital stay the last couple of days and then getting this I wonder if it was exactly that. God sending the doctors smoke signals to let them know that Eli is not only suffering physically with a heart condition, but emotionally more than they understood. They believe he is suffering from PTSD. This time we will be getting help. They sent us home with a hippo with chest tubes since I am pretty sure that is what bothers Eli the most. Chest tubes hurt. There is NO medication that takes the pain away. They hurt coming out even more. In the CICU (Cardiac Intensive Care Unit) they have more control over what they give to take out the chest tubes. They actually have the option of giving them medication to knock them completely out. Unfortunately for Eli his body seems to put a lot out through the chest tubes and because of that they don't usually come out while he's in the CICU. Usually he is on the floor. Because he is on the floor they are limited and cannot give them the medication they should be. They don't move them and they don't have the equipment to intubate if needed. So Eli remembers the chest tubes last time and is terrified. We knew he remembered the chest tubes we just didn't realize how horrified he was. While we were in the hospital the last couple of days we had all our pre-op appointments. So instead of pre-op appointments on Wednesday we will be going to see Child Life Specialists instead. They will start working with Eli to help in preparation and work with him throughout his stay. When we leave we will find someone to work with at home to help him cope. The hippo was sent home to help us start working with him. He does really well with medical play and that is really how we have gotten him to the point of allowing some tests to be done. God is working. I know He is. I just need to remember the next time my "hut" seems to be "on fire" God may be sending smoke signals.

Hebrews 4:16
"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need."

Eli and Dakota using play therapy. Unfortunately the masks are because Dakota has a cough and I am trying to keep Eli healthy.


Hippo


Hippo's Chest Tubes


Hippo's IV

Change of Plans

So I was going to introduce everyone through my eyes when I started this, but I think God has a change of plans for me. I just felt like I've needed to come here and get some things out and as I try to find the time to introduce everyone I feel like I'll never get to posting the other "stuff". As I mentioned before when I first thought of doing a blog it was because I wanted to encourage moms and dads of children affected by autism. Then when I actually gathered up enough courage to start, it was because of the growth God has given me lately and I wanted to encourage others to grow as I have.

Eli is my miracle of God. There is no other way to look at it. I am ashamed to admit some things and this may anger some, but I feel I have to tell this WHOLE story as I believe it shows that God works in mysterous ways. It's no secret that I have always wanted a girl. So back when I first found out Eli was a boy, I was really disappointed. I thought he was my last baby and therefore my last chance for a girl. I didn't understand all that He had planned. If I had really been paying attention and kept my focus on God I would have seen. However, I also know that part of God's plan was my disappointment. You see after I found out he was a boy the doctor put me on anti-anxiety medication. That medication is linked to heart problems, specifically abnormal pressures in the heart. It was this abnormal pressure that God used to SAVE Eli from leaving me. He knew it, but I didn't. After Eli was born we didn't know he had a heart problem. He was actually born with three heart problems: a coarctation of the aorta, a VSD (hole between the left and right ventricle of the heart) and his PDA didn't close. The PDA didn't close because of the abnormal pressure. The doctors told me back then that if his PDA had closed Eli wouldn't be here. Thank God he is. The doctors also said that those medications they "believed" only could cause issues in the first trimester, but I know that is not true. In fact not long ago a mom and dad lost their baby boy who didn't develop heart problems until sometime between 20-30 weeks gestation and this was without medication. Add in the medication that is known to cause heart problems and well you do the math so to speak. As we all know that is NOT the first trimester so heart problems can develop after the first trimester. So I believe part of Eli's problems were caused by the medication, but the big issue, the coarctation, he still would have been born with. Therefore if I hadn't taken the medication he would have died because his PDA wouldn't have stayed open. That sounds so confusing but it really is how things were.

After Eli's first surgery we were sent home. I told them they were sending us home too early. They did surgery on Monday late (weren't done until almost midnight) and they had made the decision Wednesday they were sending us home. One week to the day we were discharged we ended up back for an additional seven weeks. During those seven weeks his heart recoarcted. If we had been at home who knows what would have happened. His VSD also closed. They were not expecting it to close let alone close so soon. After those many weeks in the hospital they didn't think he would have any other problems. In my mommy heart I knew better.

Back in January 2009 they discovered that he had aortic stenosis. He wasn't born with this. If he did not have the original heart problems I wouldn't have been followed by cardiology and we wouldn't have known about the aortic stenosis and now the mitral valve issues.

God has plans. There is so much more to say, but I want to get this posted and get this out there so if another mom is going through this she can know that God is in control. There is hope through our Lord and Saviour Jesus Christ the Great Physician.

A is for Angela

So as I start this blog I think it's important that people get to know all of us individually (at least through my eyes) just a little. So since my name is the first letter of the alphabet I'll have to go first.

I was raised with four brothers and no sisters. My parents wanted a girl for a long time. Of course they were always grateful for the children God gave them, but they were hoping and praying that He would bless them with the daughter their hearts desired. So in 1972 He blessed them with me. It seems to be a hereditary thing for my mother's side of the family to have mostly one gender of children. When they do have children of the opposite gender, there tends to be only one. So I should have known the course my life would take. I can only think that if I'd been paying attention to Him that I would have taken things much better throughout my life and not made some of the mistakes I've made. Mistakes that I'm too ashamed to put in writing. But throughout all the mistakes I've made my parents were faithful too me, loving me unconditionally through it. I am so grateful for that and I believe it's made me not only a better person, but a better parent. That is how God is with us. He loves us in spite of of all our mistakes. What a testiment to Gods love my parents portrayed. I have so many traits from each parent both good and ones I'd like not to have (thanks for the knees dad). I'm grateful for these traits though as my parents get older and some day (hopefully not any time soon) go to be with the Lord. They are something I will always hold in my heart and will help me remember my parents. Some traits I can't really tell who I got them from and other's I really wish I had inherited. One of these traits is my mother's gift for creating all things crafty. My mom tends to be the kind of person who make something that looks like it needs to go into the garbage and make it look like it is worth millions of dollars. It amazes me. I want to learn how to do some crafty things like make bows, make necklaces, and scrapbook. However, I guess I'll have to stick with the things I can already do well like clean, organize, and my strong determination to get a job done until I figure the others out.