Thursday, September 12, 2013

I I haven't updated in so long and I apologize. We have had a lot going on and the little time I do have to myself,I try to sleep...maybe..usually not though. So Taylor and I are not getting married. I'm slowly accepting it. We are great by the way, and our relationship is stronger than ever. However, it would not be a good decision economically for us. We have the wedding paid for, but the legal bond that comes with marriage is what would not be beneficial. Hopefully, once I am finished with school in 3 years, we will marry then. Aiden has been doing fantastic! He had a minor surgery to replace his central line. It has been repaired 2 times already, and if it were to break again, he would have needed an emergency surgery and we would have risked using that access point. (There are only 7 in the chest and once one is pulled, it creates scar tissue. This makes it where we can't get a central line in which means transplant) anyways. I wanted to avoid all that so decided to have it replaced in a controlled environment. He got a round of antibiotics before his procedure and then had it replaced. He also had a hearing test which he scored perfect on! We are so so relieved! Other than that he is doing wonderful! Oh and the funniest thing happened. I was literally just talking to Aidens nurse about what happens if an adult has a bm on the operating table, because with a child they have a diaper one.... well. Aiden knew I was curious and had an explosion right after they got the sterile field set. I can't help but to laugh...oh the joys of short bowel syndrome. Anyways... I started school and oh goodness it is going to be a hard semester. I am only taking 7 hours but on top of being Aiden's mom, I have my hands full! I also have started to redo some furniture to sale! I love it! It takes a lot of time but it gives me a little bit of an income to spend on little one. Other than that, not too much is going on. We plan on going to pittsburgh on october 17th for another appt but I will update as that gets closer:) God bless and thank you for the prayers!

Thursday, August 15, 2013

Night terrors, and throwing up stool.

You like the title? I don;t because that is what has been going on lately. Well not to this day, but the past two weeks it has been. lets start from the beginning.
Aiden started acting really fussy about 3 weeks ago. I figured it was a tooth or something, no big deal. Well then he started to vomit some, which I still didn’t think too much of sense he vomits off and on. Well on the 30th he started to vomit stool, and have blood in his diapers, so I called the GI. They didn’t return my phone call until the next day, which Aiden was back to his happy nor mal self, of course, but they had us go Into the ER anyways. So here we go to cooks, once again, first thing in the morning. They did some labs, blood, urine, and stool cultures, and took some x rays. Lab work was perfect, and all the x ray showed was some gas which means his intestines weren’t moving like they should. My logic is this: Aiden has no illieocecal valve, which connects the small and large intestine together. Without this, stool can come up from the colon and into the stomach, causing him to vomit stool. Since his intestines aren’t moving like they should, it irritated his intestine lining, causing the speckled diapers. So we were asked if I wanted him to be admitted. Of course, I said no, so we were on our way home within a few hours with a Rx of flagella, and instructions to wait on cultures.
So here it is Friday, and we have been trying to get up to Missouri to see my dad, and pawpaw for several months now. With the pending cultures I was hesitant on going, but I went with my “gut” and we carried on with our plans. Not without a few remarks from people about how “foolish” we are being though. But how would they know? I am the one who spends every moment with Aiden, I know when he is sick, and when things are just a fluke. I knew this was a fluke. While visiting with my family, my pawpaw decided to tell me how he picked to join the air force, which is actually kinda funny. The marines wanted him to join, but his mom said not before you finish school, so he did just that. Once he graduated, his dad came to him and said that the following Monday, they would be cutting the cotton. My pawpaw hated cutting the cotton. So he met up with his buddy, and said, let s join the service, when asked which one, he said whichever one will take us the fastest. So they go down, and the first office they went to was the air force. My pawpaw asked when they could begin their duty, and the officer said, Monday morning! So a few days later, my pawpaw was off to serve our country. 21 years later, he retired. Anyways, now that you have had your history for the day…
We came home after a short visit, and like my gut was telling me, no cultures had grown. I was still relieved none the less. So we carry on with our business, PT, OT, ST, and all the other T’s that we have through out the week, when we finally had Aiden’s GI appointment. If you have been fowling Aiden or me for any amount of time, you know how important weight is to us. Just one ounce means the world to us. Aiden had been losing a lot of weight, gaining an ounce, then losing some more. At one point he was down to nearly 15 pounds. I just knew we were going to have to increaseTPN when we saw his GI doctor. I put him up on the scale, and then it came up. 18.2 pounds! He gained a whole pound in 2 weeks! Holy smokes, it was a miracle, all the praying and sleepless nights, paid off. He was finally growing! His Gi doctor was very please with his improvemnts. His Bun is still low, so we are increasing the amount of water, NOT calories, in his TPN to help keep him hydrated. I suggested once the summer months are over, if we can start weaning him down on TPN again, and she doesn’t see why not! YES YES YES YES!!! We are WINNING!!! We all left the appointment with a smile on our face!
But this is Aiden we are talking about. So as soon as something bad happens, something else goes wrong. The other night, Aiden was screaming at the top of his lungs at 5 am. I went in there and he was asleep. He would not calm down so I picked him up and help him for about 15 minutes until he stopped. All the mean while still sleeping. I put him in bed with me for the rest of the night, which I have NEVER done, and he slept until 7 am, when he did the same thing. I called his pediatrician, and she said it sounded like night terrors. Wonderful. So I get on wonderful Facebook, ask some friends if this has happened to their children before this young, and sure enough, Aiden is not alone. That did make me feel better, I just hope it never happens again. Summer is coming to an end, which means school is about to start up again. I am so ready, but so not ready to leave Aiden. Maybe it will be good for me to be around people my own age though, and even….socialize, whatever that means anymore. I am just glad I can wear jeans and t shirts every day. After all, that is all my wardrobe is anymore! I am so ready to start a new future for our family though, and finally say goodbye to government assistance. It has been a great aid to us, but I am ready to be off of it. I have always worked, and not working makes me feel lazy. Though my “job” is Aiden, which trust me, is a full time job, I cannot wait to financially provide for him. In the meantime, I will do my best to give back to the community, and make sure Aiden stays healthy! That is all for now! Sorry it is so long, I had a lot to catch up on!
“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you’.” Psalm 32:8 “Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.” Proverbs 3:5-6 “Never be lazy, but work hard and serve the Lord enthusiastically.” Romans 12:11

Tuesday, July 30, 2013

My biggest fear is losing Aiden. I know a lot of people say that about their children, and I know they speak those words with every ounce of honesty they have in their body. When your child literally stares death in the eye, this feeling is hard to shake off. Aiden wasn’t supposed to make it to 6 months. Period. Unless you have been given those odds as a parent, you will never know the toll it takes on your heart. To have a doctor, you have barely met, sit there, and say you will be lucky to take your child home. Those feelings don’t leave you. Ever.
I know a lot of people think I am over dramatic at times. Which more than likely, I am. I panic at every cough, and think the worse of every sneeze. I wonder if *this* fever will be the line infection that causes him to become septic, or this surgery is the one he will never awake from. That is what you do as a parent though. You worry. You worry in your sleep, dreams, driving, thinking, cooking, cleaning. You WORRY all the time. Day in, and day out.
Having a special needs child makes that anxiety even worse. I don’t know how to explain it, but honestly, you don’t want to know. I was hoping and praying that Aiden’s primary surgeon was wrong. That he COULD have the STEP procedure again. I got the call today, and my gut was right, he doesn’t qualify, and the risks outweigh the benefits by a long run. I don’t know why, but I just started to cry. I put so much hope into this procedure, thinking that just a few more cm in Aiden’s small intestine could make all the difference. Instead, I am left in the dark, wondering why he is having bloody stools, vomiting stool, weight loss, and having the most foul smelling diapers you could imagine, which anyone in the short gut world, these are ALL red flags SOMETHING is going on. We did labs today, so I will know what those are tomorrow, which I will talk to the GI’s nurse about a colonoscopy/endoscopy, or x-ray, or maybe even all three. I just want answers. I want to know WHY this is happening.
In other news, we had the 4th annual Gastroschisis awareness day. Yup, the culprit of this mess, we celebrated today. I hate this birth defect. I truly hate it with a passion. It is more than just a disease, it is a murder of innocent children. It takes a part of parents away that can never be replaced. It is a criminal, wreaking havoc on lives, and everyone that it affects. Leaving some injured, and others with nothing more than a scar and a story. It’s not fair. Why my child, why ANY child, ANY family. WHY does this have to happen? That will be one of many questions for God once I get to the big pearly gates. I know this post wasn’t exactly uplifting, and happy. But to be honest, it has been hell the past few weeks. I haven’t slept, I have been stressed, upset, angry, and every other emotion possible. But time is a good thing, and heals all. I HAVE to remember my favorite verse. Philippians 4;6. It’s my background on my phone as a constant reminder, worry about NOTHING. Pray about EVERYTHING. Happy Gastroschisis awareness day<3

Thursday, July 18, 2013

We have always had the STEP procedure on the back of our minds since Aiden’s initial one on 3/14/12, but recently we have REALLY been talking about it. Pretty much, what it is, the surgeon will take Aiden’s entire small intestine out, along with his large. The parts that are dilated, he will cut, staggering each cut. Once they are opened, he will staple the sides, creating an accordion effect, thus, making more surface area in the large intestine, which means more nutrients will be absorbed. Last time Aiden had this done, he went from 20cm, to 40cm of small intestine, when the surgeon was able to get 6 steps in. This will be a great opportunity for Aiden to get to higher levels on feeds, and decrease TPN. However, those of you that have been following Aiden a while, know how long it can take for his gut to wake up. Last time he had this done, we couldn’t get above 4mls an hour on feeds for nearly 6 months. Scary, huh? This means we will take a huge step back for a while. How long is a while? Well, that all depends on Aiden, and his gut, which we ALL know by now, is however long it wants to take. But let’s face it. Aiden has been the same weight for about 4 months or so. This is NOT ok in the short gut world. His GI doctor and I have had our outs, but I think when I finally broke down crying in her office, we had a better understanding of each other. I am the mama bear, and if I think something will work for my child, let us try it as long as it does not interfere with his health. She is a more experienced doctor, so she is a bit set in her ways. Which, is great, because she has had a lot of practice in this area, as I, have only had practice with Aiden. I think that now that we have come to common grounds, we can make great things happen in Aiden’s health. Because that is what this is all about, right? But for now, this is all talk until we have a final date, which I will know Tuesday! Now for school. I have right at a month until it starts. I am not looking forward to it. Last year I took online classes, full time. I have the attention span of a 5 year old, so you can imagine how well that went. It was hard for me to focus, so this year, I am taking in class courses. This scares the living DAYLIGHT out of me. I have only been away from Aiden a handful of times. I do not like the thought of leaving him 3-4 times a week! I know he is in great hands, but as a mom, I imagine the absolute worst thing happening. But I know this will better our future as a family! Oh and I am changing career paths! I am going to become a sonographer! Yes, that means I will be able to detect rare birth defects like… GASTROSCHISIS while in the womb. How stinken awesome is that?! Taylor and I have been discussing our options that pertain to the military, and things of that nature. We still are not quite sure when the best time would be for him to enlist in correspondence to our wedding, and insurance, so if ANYONE has any suggestions, do NOT hesitate to talk to me! This is all new territory! Since Taylor is going into the military, it inspired us to get healthy again! I personally have lost 17 pounds! I am so excited about this! Taylor has also been pushing himself to get into shape, both mentally, and physically for the challenges he may face in the future. We went to the peach festival last week, and though it was HOT, Aiden managed to stay nice and cool. We covered his stroller, and then put ice packs inside it with him. He didn't make a peep, and infact, fell asleep. Which of Aiden is uncomfortable, he will let you know, QUICK! We have been doing great keeping him hydrated, which is a HUGE thing with SBS! So keep the prayers coming for that! Other than that nothing new is going on here! <3

Thursday, July 11, 2013

I haven’t updated in a while, but not too much has been going on. Aiden had a low grade fever, and I was worried it was from a line infection. We went on a wild goose chase to try to get cultures ordered, and they wouldn’t. Turns out he is fine, but I still like to be safe than dory. I also was trying to get heparin ordered, which is a blood thinner, and I wanted it for his line, because it was sluggish. The nurse at the ID clinic said they couldn’t order it because he receives ethanol therapy, which I know you can have both, you just have to flush really well with NS in between doses. ANWAYS. We did his labs, and what do you know. His line POPS! A big ‘ole hole, right there. Freaking wonderful addition to my already terrible day. Anyways, I took him to the ER, since we were already at cooks, and we were out within 45 minutes. I was pretty impressed. Aiden is back to his happy self and all his labs are looking wonderful! WooHoo! We are still trying to get him to gain weight though; we have been stuck at the same 18 pounds for months. UGH. But all things are possible. I just need to wait and be patience, and trust in God! We celebrated the fourth of July with friends and family. It was so much fun just to have a day of rest, and time with family! Aiden really enjoyed the fire works! I was talking with an old friend today, and we were talking about recent happenings, and catching up on life after high school. It was nice to be around someone who isn't in the medical field, and have a since of “normal” in my life. Ha, there’s that word again… It was good to talk to her though. It made me so thankful for the great people I have in my life, and the amazing supporting family I have. I have lost a lot of people in my life, for what I think is for the better due to some of their actions. I choose to better myself by the people I am around, and the lifestyle I lead. This does not in any way mean that I am perfect. I am not saying that, because I am far from it. But I am thankful for this life God has blessed me with and the wisdom he has granted me to make better choices. A lot of that, I can thank Aiden for as well. He really did save me. I was being the typical teenager, and was living life all wrong. I am so thankful for that little huph-a-lump<3 I also was able to get with some old friends from my cosmetology class, and their babies, while the kids played in the water, Aiden included! He did NOT want to get out of that water! It was so cute. And my friend's babies? So stinken adorable. I really need to start making time for play for Aiden. We are always going, non stop! It's time to make time for Aiden just to be baby! Military talk is still happening, but has slowed down after all the excitement has wore off. We are still looking at options, but we are not ruling it out quite yet. It will be a big change for us all, and all our family. We just have to take it day by day! I am still in the midst of wedding planning, or really it’s just looking on pinterest and getting some really cute, cost efficient ideas for the big day. I can’t believe it is only a year and half away. It is getting close! I am hoping everything comes together perfectly, so we can finally make becoming a family official. Funny how so much planning goes into one day, for once piece of paper! Don’t get me wrong, I am so excited about the wedding, but even more excited about our marriage, and our new beginning, the three of us<3 I am trying to get the word out about gastroschisis, short bowel syndrome, and birth defects! If you can help me in any way, please do! I want to reach new people so they know they are not alone, and so more awareness is brought to it! So many people turn their head to birth defects, and it is a SHAME! We need to put an end to it!

Monday, July 1, 2013

military wife?

Remember the big news I had? Well despite what several people thought, no I am not pregnant. Taylor is more than likely joining the military! Shocking, I know. It's scary to think that we may move our entire lives but I know in the long run it will be better. Aiden will have great insurance, not to mention they will pay for his school. It will take a while to get used to, especially when Taylor is away. He has been there every day since Aiden came home and was there for me for moral support before that. I am so proud that he is wanting wanting to serve our country<3
This isn't a done deal. We still have a lot to think about, and we need to look at all options. I know God will see us through, and guide us to the right decision though. No, he is not leaving us behind, or giving up on our family. We as a team, are trying to better our lives. I am so thankful for the sacrifices he is willing to make for us. He is a great man. Onto other news... Aiden got his immunizations. He was SO HAPPY before. Then, the needle struck and 3 days later he is still a grumpy butt. I hate that it takes him so long to get over things. His poor little face is just pitiful when he doesn't feel well. He also has gained weight! He is up to 18 pounds. I got a copy of his growth chart. Its funny, every dip and every high tells a story. I know what we over came, and then saw the days where I felt defeated. It's funny how a piece of paper can bring those emotions back. Well I suppose I should go on to bed! Just a quick update on my boring life:) .

Sunday, June 23, 2013

Someone can preach to me, until they are blue in the face, about how God does not exist. I will sit back, listen to their points, and opinions, and then tell them why I KNOW he is real. It’s amazing to me how every single person comes to your life for some reason. I’m not talking about family; we all know why they are there. To make you crazy, pull your hair out, to lean on, defend you, and love you. I’m talking about every day to day encounters. Maybe it is a complete stranger, you have no idea who that person is, what their background is, but one small kind gesture can change their attitude all day, then they pay it forward, and so on, and so forth. There are the enemies, the people who tore you down. Well look where you are today. Standing tall, overcoming obstacles, challenges, and proving that you can rise above the hatred. I could go on and on about different relationships, spouse, children, friends, etc. But there is one relationship I have just began with someone. This man has taught me a very valuable lesson. Not to give up. I’m talking about Matthew Murphy, you know, the Iron man that I have been posting about, the one who will be carrying the HOPE flag? Yeah, that one! Of course, Aiden has taught me never to give up, but I want to talk about someone who isn’t family. It was by fate this person would come not only into my life, but the lives of hundreds, and thousands. Who else is crazy enough to do a marathon, 140.6 miles long, to bring awareness to birth defects? Not just the one that effected his son, but ALL!!! I say crazy with compassion. I respect everything Matthew is doing, and will encourage him no matter where he may go!
But back to my point about God. It’s not by coincidence we meet this people, the good, the bad, the loved, and the ugly, it’s by fate. Our entire lives are planned out for us, isn’t that awesome? Yes, bad things are going to happen, you’re listening to the mom who’s child was born with only 10% of his intestines! HELLO! BUT he only gives us what we can handle. Galatians 6:9 And let us not grow weary of doing good, for in due season we will reap, if we do not give up. Philippians 4:13 I can do all things through him who strengthens me. Proverbs 3:5-6 Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.
ere, and will get you through. It just amazes me how every little thing in your life, happens for a reason. It will lead you to new opportunities, new people, and possibly a new you! Today, I signed Aiden’s name on the flag Matthew will be carrying across the finish line. Listening to him speak brought tears to my eyes, it made me realize, I can do anything I set my mind to, I just need to bring myself to do it!
There ya go, God’s words himself. He will see you through hard times, and make you stronger, and more brave than before. Once you have read this, please take 3 more minutes to vote for this awesome man to get him to Kona!!