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Our 2010 Journal
I have done it again... dang it! I have let crazy time get the best of me. Do you ever feel like you wait all year for Christmas, then boom it's here? Where does the time go? I am really sorry I am so behind. So to make up for it... I will write an extra long post today!
Things have been going so well. I hate to even tempt fate by saying that, but it's the truth. Carter is doing the absolute best he ever has. I probably mentioned a couple of hundred times that I was determined to make this our year. I can say with only a few weeks to go, we have come a long way! While 2010 got off to a rocky start with Carter's anemia, since May, we have watched with wonder as our little boy grew and started doing things we only dreamed of. You have probably noticed his significant weight loss. Since weaning off his steroids, we have gladly watched his cheeks go down and down. He has lost over 2 pounds since coming off of steroids. It was a little alarming when we started seeing those numbers fall but I believe it was weight he needed to lose. I think we have finally reached the right weight for him. He really looks amazing. With the weight loss, came the walking. I think he was able to move much easier and not so top heavy. Remember he did break his leg in July, but since then has been walking and exploring everywhere! It's a challenge to keep up with him! Maybe that will help me lose some weight! Ha Ha! Another major accomplishment this summer/fall is Carter's eating. We have achieved 3 meals a day! He only gets tube feeds at night and we are working on getting rid of that too! He eats all kinds of things. We have even been able over the last few weeks to feed him the same food we are eating. Not having to make a special "Carter" meal makes life much easier. I have to say, sometimes while I watch him eat, I have to hold back the tears. He has come so far. So far. The fourth item on our progress list is talking. He still doesn't talk but we have seen significant progress there too. It's just not as obvious. He still uses mostly signs to communicate but is making lots of new sounds and does say "bye" and "hi" and "pop". Don't ask me why he says "pop". I don't know. Just 3 days ago, he said "mom". Made my year for sure!! I'm not sure he realizes I am "mom",but I'll take it! Of course Sean is working very hard on "dada" now!
On his medical side, since he has been healthy, we don't have a lot to report. We have spent the summer weaning and stopping medications we felt weren't necessary. The main group of drugs were the reflux drugs we had started in May. I never thought Carter had reflux. He never had it in the NICU and while he is the ideal kid to develop it, I just never saw it. But keeping him safe is the goal, so we tried the medications. It became obvious to us that it was his IgG level that was causing the retching. Because when he would get his big monthly infusion the retching would go away. I tell you all this craziness because we started Carter on a weekly Sub-Q injection of IgG in place of his big 4 hour IVIG infusion. It accomplishes many things for us. It keeps us out of the clinic/hospital for an entire day getting the infusion, which reduces exposure. We do not have to get a perphiral IV, which was always a challenge. It keeps his level stable versus giving him a huge boost and then letting his level drop to crazy lows. And most important to us, it gives him a little jolt of immune protection every week. Last week, he had a little conjestion, but after his injection, it cleared up. Everything we can do to get him though the winter is important and we are so happy we made this change! This will also be the first year Carter will not recieve Synagis (RSV Protection shot) and that makes me very nervous! But with the weekly IgG, I am praying we can avoid RSV and Flu. Cross your fingers!
On the personal side, our schedule continues to be wild. Carter has 9 therapy appointments a week. He gets 3 feeding, 3 speech, 2 physical therapy and 1 occupational therapy. So our weeks are filled with lots of trips to Our Children's House. One of the coordinators told me last week that it's like Carter is the mascot for OCH. Not exactly what I was thinking, but maybe she meant all the progress he has made.... yea, I'm sure that's it! By the time we get home, have some lunch then it's nap time. In my "free time", I have been working on starting my own photography business. Being a stay at mom was never really in my plan. I love to work, but our situation is such that I need to be with Carter for all his appointments. I have been doing some soul searching about what options were out there that would allow me the freedom I needed, something I was good at and of course, something that would help pay the bills. I looked into real estate, but quickly realized, it really would be too much time away to be sucessful. Over the past year, I have been working hard to learn my camera and trying new techiniques for taking Carter's picture. But it wasn't until I was talking to another mom that I made my decision... this mom has an autistic son and I told her I wanted to take some family shots of them. She had a stunned look on her face and holding back tears, she said they had never had a family picture taken. Her son is 7. It simply broke my heart. It was then I decided that I would work hard to make professional photography available to families just like mine. Families that have been through so much, little money left at the end of day for extras, and families that deserve to have their memories preserved. So hopefully I will be fully open for business in January. I still have lots of learning to do, but everybody has to start somewhere, right? I will be sure and do lots of self-promotion when I am up and running! On Sean's side, he is still searching for the right postion. We did get some encouraging information yesterday and begun praying that this position is our answer. It will be two years in January since he was laid off. This has been a very trying time for our family, but God has never left us and every month, somehow, someway, we are taken care of. With many of our friends back in the hospital and having other hardships, we are reminded everyday that while we don't have all the answers, we are Blessed. So Blessed. I know many of you continue to pray for us and we feel your prayers. Please keep us on your list as we still face many obstacles as 2011 arrives. Thank you for all your love and support! We couldn't do this without you!
What a week! I am so excited to announce that Carter is officially a toddler! Because..... last week, he started to walk!!! I have waited for this day for so long! He had a very eventful week because along with walking... he had his first pee-pee on the potty and learned how to open all the door handles! It was quite the circus around here! We have hours of video footage if anyone has a couple of hours to burn! We will try and get them edited down to a reasonable amount and get them up on youtube. We also took Carter to the State Fair of Texas and he got to ride his first roller coaster! I have put all those pictures on my blog. I am completely in awe of the little guy he is becoming daily. Everyday something new! We continue to work with him on his talking, but he is making progress. He is just doing so well. With fall fast approaching, I am praying that the winter will be kind to us and he will be able to stay healthy. I'm gonna keep it short tonight, I have lots of fun pictures to add over at runningwithuntiedshoes.
With all our joy, we have also been doing a lot of praying for several of our friends who are struggling. Please continue to pray for Carter's friends and their families.
-Emerson White
-Cooper Knight
-Eithene Hilliard
"The quality of being cleverly inventive or resourceful"
Thinking outside the box. When I think about our life, ingenuity seems to describe us pretty well. Our latest adventure began last week when I ask Carter's physical therapist about a tricycle. There is actually a company that makes a tricycle called an AmTryke which is designed for children with disabilities. Carter is still a touch too small for his bike, and so I thought the next logical step would be a tricycle. Our physical therapist said he really didn't need an AmTryke and shared that a regular tricycle would work best for him. That is when I remembered...we have a tricycle in the garage. Our next door neighbor gave it to us when their son outgrew it. Perfect! So as soon as we got home, we got it out! One problem, Carter's little legs were still a few inches too short to fully extend the pedal. That's when Sean and I both looked at each other and decided to be "cleverly inventive". After a couple of trial and errors, we got the 2x4 attached to the pedal with an old oxygen canula! New pedals were complete with a black rubber bungee thingys for foot holds! I told you it was creative! After a little lesson in pedaling, he was off. He loved it! Of course, there were some flaws in our design and his foot slipped every so often, but I know I had tears in my eyes to see my little guy pedaling up and down the street! It was one of those moments I had dreamed of. I think Carter thought it was pretty cool too! I have posted lots of pictures over on my mommy blog, which I have recently started posting on again. Check out our future "Tour de France" Winner!
http://runningwithuntiedshoes.blogspot.com/
Many of you have also been asking about the Scentsy Fundraiser for Carter. The party will remain open until the 21st of October! Many of you have already ordered your warmers and scents!
Thank you for your support and love!
Here again is the link for the party: https://tbaxter.scentsy.us/MyPage
Hi Everyone,
I wanted to share with you a fundraiser my Aunt, Sandra has put together for Carter. It is with Scentsy Warmers. You have probably seen people driving around with huge Scentsy logos on their cars. Maybe you already love Scentsy, but if you have always wanted to try it, now would be a wonderful opportunity. Scentsy Warmers are amazing. My aunt gave one to me just a few weeks ago and I have yet to turn it off. I love it. it's better than an candle or plug-in I have ever used. One reason I love it is that Carter still has Oxygen in the house which means NO candles and I love candles, but with Scentsy, I just leave the little light on and poof! Instant fragrance that fills the house! My Aunt has arranged for her Scentsy consultant to donate 25% of everything sold at "Carter's Party" to Carter's Medical Account. A huge blessing since we just lost Carter's private insurance as of October 1. These donations will be very needed in the coming months. I hope you enjoy your new Scentsy Warmer!!! Thank you for your love and support!!!
Love,
Sean, Chelle & Carter!
Here is the link:
https://tbaxter.scentsy.us/MyPage
I am thrilled to announce that we have internet again!!! We have been using this "loophole" on our phones to have internet, but after my phone reset 7 times last week while trying to post, I had had enough. Just so happened that day we saw an ad on TV for $14.50 Att&t internet! Perfect! So after a very long couple days of waiting for installation... we are up and running again!!! What did we ever do without internet? So with that news, hopefully you will priviledged to lots of new posts and pictures!!!
I can't even remember everything I need to update! We are so busy and going non-stop! Carter has 9 therapy appts a week and any additional drs appts!! Crazy, I know, but he is doing so good we wanted to maximize his progress! We got his leg cast off 2 weeks ago. He has been very slow to try and walk again, but two days ago, I walk around the corner to find him pushing a chair. Our physical therapist is very encouraged and hoping he can get back to where he was very quickly! We hope so too!!! I can picture him trick or treating door to door this year! He had a little cold 2 weeks ago and we have been doing lots of nebs and working hard to get his oxygen back where it was. OFF! We are not quite back there, but the weather has been so off and on that everyone's allergies are acting up. It's not like we aren't used to the O2, but it is so nice to have it off.
We had the pleasure this past weekend to go to our friend's Keegan's 3rd Birthday party. Carter got to ride his first pony!!! Screamed at first, but settled in ok. He and Keegan rode together and that seemed to help both of them feel safer. He also got to experience his first bounce house. He loved it! He simply loves to be moving! He never stops these days and we love it! I'll keep it short tonight, while I try and remember what I am leaving off. I have lots of new pictures to get up too!! Get ready- cause I'm back!!! High-speed and all!!!
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