Saturday, May 30, 2015
Facebook update from Help Anton
Day +65 Well hello everyone. Can't believe its been 4 days since I updated Anton's page. We have been enjoying being home (RMH home) and have enjoyed the activities at RMH. This has been a busy week. We had clinic several times, we got to see Dr. Tolar on Friday. We also got to see Prayers for Cole and his sweet family several times this week. We rode the shuttle one day to clinic and the boys loved that. They bring a bounce house to RMH once a week and Anton enjoyed pretending to be a Power Ranger while attacking his brother. We might have over done it a bit but Anton had a blast. We also went to a carnival at RMH which was also a blast. Jason took the kids to watch a movie (at RMH) while I snuggled a sweet little 6 month old baby girl. Her twin sister has been in the hospital since they were born with heart issues. They are hoping she will get out in the next month or so. And the highlight of everyone's week at RMH is BINGO night!!! It is seriously so much fun and they have the coolest prizes. Anton won a ninja turtles dream light and he was sooo excited. This is his second one and he likes having two :) Kenya finished up school at RMH and will be in 3rd grade next year!!! It was so hard for me to let her go since she has always been homeschooled but she had a blast and the teachers were so great with her. Next week the school is taking them on a field trip everyday of the week. What a fun way to finish out the year. Our friend Maggie owns Sweet Little Toppings and sent us the sweetest care package. The kids LOVED their ninja turtle hats and she sent Kenya the cutest headband bows and some treats for Jason and I. Y'all go check out her FB page. Anton has been eating a lot more by mouth and is now fine with textures. This is HUGE because if he had anything with texture before this he would freak out make himself choke then throw up. Now he eats it like it's no big deal. Today he ate scrambled eggs for the first time ever and did so good! In think y'all are caught up now :) I most likely won't be updating everyday but if something crazy happens I will be sure to let y'all know. - May 30, 2015 at 11:15AM http://ift.tt/1r2lUi4
Tuesday, May 26, 2015
Facebook update from Help Anton
Day +61 We went to clinic today and thankfully it was a quick trip. Anton is doing well and the antibiotics seem to be working! The highlight of my day was getting to see sweet Baby Cole and his Mama and Daddy. His Mom and I had a girls night a few nights ago and it ended with us back at their apartment for some snuggle time with Cole. I seriously love that baby so much!! Cole will be admitted to the hospital in June to start his Bone Marrow Transplant. Go like his page and follow his BMT journey! Prayers for Cole We are really enjoying being in our new room at Ronald McDonald House, in fact I think half the kids who live at RMH were in our room at some point today to say hi and check out the room, ha. They also had a super fun carnival today at RMH, all three of our kiddos had so much fun and it felt so normal. There are moments here when we have a chance not to think about our kiddos being sick but instead get to laugh with them and watch them enjoy life and tonight was one of those nights. We seriously love living at The Ronald McDonald House and are so thankful to call this our home away from home. - May 26, 2015 at 11:04PM http://ift.tt/1r2lUi4
Monday, May 25, 2015
Facebook update [pic] from Help Anton
Day +60 We are back at Ronald McDonald House!!! We had a nice relaxing day and will be going to clinic in the morning. via Help Anton http://ift.tt/1GzsJlI May 25, 2015 at 10:41PM
Sunday, May 24, 2015
Facebook update from Help Anton
Day +59 I'm planning on giving better updates for the past few days at some point but not today :) I did want to let y'all know that Anton is doing great and will get to go home tomorrow as long as he doesn't get a fever. He only had a fever the day he was admitted and hasn't had one since. His ANC and WBC were good today but because they keep falling then going back up they decided to do IV IG today which will boost his immune system and hopefully he will be able to keep his numbers up after this. Papa T and Wita headed back to TX today and we are beyond sad about it. It was so nice having them here and we already miss them a ton. Anton's blood type is O (can't remember if it is + or -) and his donors blood type is A. At some point after transplant Anton's blood type will change to his donors type. This doesn't normally happen until closer to 100 days post transplant but Anton's blood is already showing some A cells!!! This means that his blood type is already changing over to his donors type!! WBC 2.0 ANC 1.7 - May 24, 2015 at 05:09PM http://ift.tt/1r2lUi4
Friday, May 22, 2015
Facebook update [pic] from Help Anton
I think he just needed to recharge his batteries. He slept for almost 24 hours and has been up and happy since 8am with no fever! via Help Anton http://ift.tt/1c9A1jy May 22, 2015 at 11:15AM
Thursday, May 21, 2015
Facebook update [pic] from Help Anton
This little cutie only woke up a few times today. He was awake during dressing change, awake to eat a few jars of baby food, awake to watch Cars 2 and awake to go potty, but that was it, maybe 3 hours total. He hasn't had a fever since this morning which is good. His anc dropped to 0.7 so he got GCSF today. Hopefully we will only be here for a few days. via Help Anton http://ift.tt/1FrhXfl May 21, 2015 at 10:19PM
Facebook update [pic] from Help Anton
Day +56 Anton was acting totally normal yesterday and woke up with a 101.8 degree temperature this morning. Anything over 100.5 is an automatic admission to the hospital. He is not feeling good at all. via Help Anton http://ift.tt/1AhEMmQ May 21, 2015 at 11:11AM
Facebook update from Help Anton
Day +55 We went to clinic today and got to take Wita with us!!! Anton doesn't have many open wounds but the ones he does have are very infected. We cultured the wounds and they put him back on IV antibiotics that we are able to do at Ronald McDonald House. I'm praying these antibiotics start kicking in soon so we don't end up back in the hospital. His infections make his numbers drop (at least that's what I think is the cause). His wbc and anc are both a little over 1 today. We were able to move into a new space at Ronald McDonald and we are pretty excited about it. Well not about moving but about having more space. It has high ceilings, a stair case that leads to a loft style room which has 2 beds in it and we have a separate bedroom downstairs. After we were done in clinic Wita and I brought Anton back to Jason, then we picked Kenya up from school and had a girls day. We went to chili's and then to target. We had a blast!! Today is Baby Reid's first birthday! That kid has been through more in his first year of life than most people have been on their entire lives. I love that baby and his family so much and I'm so thankful I got to see him on his birthday. After we got back from target I took Baby Reid's big brother and sister downstairs so they could watch a movie with us, then all the kids went outside to play. Kenya and Judah loved playing with them and are looking forward to seeing them again soon. Anton seems to be feeling well and is enjoying time with Papa T and Wita. Several families from RMH has gone home these past few days and several more are about to go home. It is so sad to see them go but I'm so happy they are able to return back to their families. We will miss them all dearly!!! I hope y'all are doing well!!! - May 21, 2015 at 12:15AM http://ift.tt/1r2lUi4
Monday, May 18, 2015
Facebook update from Help Anton
Day +53 Today was a great day. Anton, Judah, and I all went to clinic. The appointment went well and Anton's numbers are great today. I can't remember what they were but on Friday his anc and wbc were both in the 1s today they are both above 3 and that is without GCSF!!! Anton doesn't have to go back to clinic until Wednesday!!! We got a sweet package with some super soft towels for Anton and the sweetest card and most beautiful picture drawn for Anton. Papa T and Wita got into town tonight and we are all so excited to get to spend time with them. They brought the sweetest cards from friends in El Paso. Anton enjoyed me reading him the sweet messages written inside the cards. We also got a very special card from his pediatricians office back home. We love and miss you all very much! I will keep y'all updated! - May 18, 2015 at 10:01PM http://ift.tt/1r2lUi4
Saturday, May 16, 2015
Facebook update from Help Anton
Day +51 We are back at Ronald McDonald House!! Thank you again to everyone who sent us gifts from our Amazon wish list!!! We have had a few people ask for the link to our amazon wish list but everything has already been purchased off of there which was such a huge blessing. As we need more things I will make a new list and then post the link. Thank you all for loving our family. - May 16, 2015 at 10:15PM http://ift.tt/1r2lUi4
Facebook update from Help Anton
Day +50 Today we are at day +50, halfway to our 100 days post transplant! When we started the process to see of Anton could receive the bone marrow transplant it felt like it would never get here and now to be at the halfway point is just so exciting!!! Anton's skin is still doing so great. He had a blister yesterday that I decided not to pop and today it was gone. Normally I have to pop his blisters or they keep growing and growing but this one just disappeared. It is so neat to actually be able to see Anton's skin changing!! We also had some very special visitors. Alex and Jamie Silver were in town from New York for a fundraising event where they were able to talk about Eb Research Partnership (http://ift.tt/1bVSrnB). They took time out of their busy schedules to come see us and we were just thrilled to get to hang with them for a bit. They are both so sweet and Anton really enjoyed their visit. The EB community is like an instant family. You have so much in common. Thanks for coming to see us today guys we enjoyed seeing y'all. I got a volunteer to come for a few hours so Jason came to get me. We got some dinner and went back to the RMH to eat and I got a chance to see some of the other families there. Today is also MPS awareness day and two of Anton's friends at RMH have received bone marrow transplants as a treatment for MPS (they both have hurlers syndrome). There is currently no cure and as we know with eb awareness is key so check out http://mpssociety.org to learn about MPS and to find out ways you can help. I wore purple today to honor these sweet girls and when I went to RMH today I got to see them both!! They are both so adorable! Anton will be able to go back to RMH tomorrow as long as he doesn't spike a fever tonight. His numbers did drop a little but they are still better than they were when we got here. We also got to see Dr. Tolar today! He said that he is very pleased with Anton's progress and he told Anton that he was so proud of him. He said for the whole first year after transplant we are going to have to be very careful to treat anything that comes up quickly (like illness or skin infection). It was good to be reminded that although Anton is doing great we have a long way to go before we can take a huge sigh of relief. Overall Anton is doing really really good and we are so thankful! WBC 2.8 ANC 2.5 - May 16, 2015 at 12:06AM http://ift.tt/1r2lUi4
Facebook update [pic] from Help Anton
Our sweet buddies who have MPS. Learn more here http://mpssociety.org/ via Help Anton http://ift.tt/1RS3YWt May 16, 2015 at 12:06AM
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