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
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.
Tuesday, July 30, 2013
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
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
Sunday, June 23, 2013
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!