Saturday, December 28, 2013
Monday, November 11, 2013
Melody and Madison were born exactly 5 years and 30 minutes ago.
It was at this point 5 years ago we were in the O. R. and our daughters were still alive.
It was at this point I held my daughters in my arms, listened to them breathe and watched their heart beating.
It was at this point I watched a nurse lovingly place our daughters in my husbands arms, as he looked at them with tears streaming down his face I knew our lives would never be the same.
It was at this point they were placed in my arms and Destinee helped me hold my sweet babies.
It was at this point I knew they wouldn't be with us much longer.
It was at this point I prayed that God would take our sweet babies so they didn't have to struggle to breathe anymore.
It was at this point my babies went from my arms to the arms of Jesus.
It was at this point my life changed forever.
Tuesday, September 17, 2013
Anton and Judah are the very best of friends!
Thursday, July 25, 2013
Totally short update but that's how we roll sometimes :)
God is so good!
Monday, July 22, 2013
Today for the first time in over a month Anton put his left leg down flat on the bed. For the past month if we laid him on his back he jerks up his left leg because it hurt to straighten it so I was shocked when he laid it flat! I am so glad he is making progress even if it is slow.
The day after we got home from the hospital Judah got sick with a virus and an ear infection, he seems to be on the mend though so that is good. Today Kenya spiked a fever of 103 degrees F. She was miserable but once her fever came down she was back to her happy little self. Then Anton got a fever of 101.4 degrees F. I called his doctor and they had is go to the hospital for blood work. They want to make sure he doesn't have an infection in his blood which he is at higher risk for with the picc line. we are home now just waiting for the results. I am hoping he just has whatever Kenya and Judah have and that it isn't in infection. I will let y'all know once we get the results.
Monday, July 15, 2013
Things have been going great at the hospital. Anton's leg is not hurting him anymore which is great but he still isn't moving it normally. his PICC line is working great which is amazing news. we will change the PICC line dressing on the 17th and as long as it still working we will get to go home and finish out another week of IV antibiotics at home. Kenya spent the night at the hospital on Saturday night we had a super fun sleepover with her. Judah might get to come tonight and stay we shall see. So hopefully we will be going home in the next few days. I will keep you all updated. thanks for praying for our boy.
Friday, July 12, 2013
The only thing they found on the mri was Anton's lymph nodes right around his hip are very swollen. They are hoping with a round of antibiotics the swelling will go down and his leg will stop hurting. His leg was hurting him a lot today so they changed some of his pain meds hoping it would help.
Anton's iron was low so he got a blood transfusion yesterday. About an hour into it he spiked a high fever and they weren't sure if it was from the transfusion or infection. They gave him ibuprofen and his temperature came down pretty quickly. They finished the transfusion and he did great. They wanted the iron in his blood to be at a 12 and it was 7 when they started today it was at 11 so that is great. They will recent his levels on Monday to make sure they stayed up over the weekend so hopefully he will just need one transfusion.
Despite being in the hospital and despite Anton being in pain his joyful attitude continues to amaze me. I sure do love this son of mine!
Wednesday, July 10, 2013
We just back to our room and everything went great. He does not have an infection in his hip which is awesome but now we are at square one on trying to figure out where his pain is coming from.
It is a crazy long story but I will give you the short version for now.
Anton's left leg had been hurting him for a few weeks but I just thought it was related to his EB and didn't think much of it. Well I took him for his final follow up appointment for his thumb and I told his doctor what was going on. She checked him out andandand was very concerned. He wasn't moving his leg like he normally does and he was in a lot of pain. She was worried about him having an infection in his hip joint and admitted him to the hospital a few minutes later. All of that happened yesterday.
The only way to know for sure what is going on is to do an mri under anesthesia because his xray looked fine. He is having the mri done right and we are hoping to have some answers soon.
I will keep y'all updated as I hear more.
Monday, July 1, 2013
Anton had a repeat swallow study done today and it went great. He can now have ANYTHING he wants by mouth as long as it is thicker than honey. We are so excited and so thankful for how far Anton has come.
Kenya and Judah are both playing indoor soccer and Papa T is their coach. They both had their first games last Saturday and we had so much fun watching them!
Anton had 2 corneal abrasions in June and it was AWFUL. We took him to the eye doctor for the first time ever which went pretty good. Anton wouldn't open his eyes but the doctor was super nice and treats several EB kids in the area. We have a good plan in place so hopefully he wont get anymore corneal abrasions.
Happy Monday Y'all! :)
Tuesday, June 4, 2013
I am still in my blogging funk and I may never get out :/
We are doing good.
Kenya graduated from Kindergarten and can't wait to start 1st grade! I am hoping to post a much longer blog about this soon because I am so excited for her and because I have a ton of pictures to share.
Kenya LOVES making art and she spends several hours a day coloring and creating art projects. We have a local art studio that she is enrolled in and will be in art classes once a week for the next 11 weeks. She is so excited about it!
Kenya is also finishing up her first semester of ballet. She has done really well and her first recital is this weekend!
After that she will take the summer off to play indoor soccer. Papa T is her coach which makes it even more fun.
Judah is such a fun kid to be around (most of the time, I am telling you, him being 3 is much harder than him being 2). He is a Mama's boy which I LOVE! He will be playing soccer this summer and Papa T is also his coach, we can't wait to see him play.
Anton is getting longer, he is a little over 35 inches and weighs 22 pounds. I can't wait till he is back up to 25 pounds but I know that will just take time and his dietitian is happy with his progress so far. We got his iron checked today and it was 8.5 which is a pretty big drop from February when it was 11.2. If we happen to be at the hospital with an iv his doctor will do a blood transfusion but if not we will just see how it is in a few months, if it drops to 6 we will do a blood transfusion at that time but if not we will just wait. His hematologist isn't too concerned and at this point and I trust his judgement. He is one of my very favorite doctors and really spent a lot of time with us today. I asked him lots of questions and got his opinion on a few things I was concerned with. I am so thankful for our team of doctors!
As Anton gets older dressing changes are getting harder. He HATES his baths and cries at random times through out the day because he doesn't want to do dressing change anymore. It is so hard for me to listen to him scream during his baths and it has brought me to tears more than once lately. He is on Morphine and Ativan for dressing change now and it isn't really helping. We have a meeting with pain management soon so hopefully they can figure out something that will help make it easier.
Thursday, April 25, 2013
I have so much to update you all on but so little desire to blog :/ I will make it short and sweet.
We took a day trip to Austin last week to celebrate Uncle Toe Toe's new book Jump Little Cake, Jump. We had such a great time and we really love the book. If you haven't gotten a copy yet you really should, you can get it HERE. It is a super cute children's book about Preston Spice, an adopted cupcake, who is trying to find his flavor in the world. Super, super cute book and it comes with a CD featuring the shake it like a cupcake song, which at the moment is Anton's very favorite song. We shake it like a cupcake at least three times a day.
Judah has gotten to the age where he likes to dress himself and it is always super cute! He is a strong willed child and right now is extremely defiant most of the time, but he is also so so cute and charming. I love that boy so much but I am ready for this phase of testing me all the time to be over. I have never had a child go through terrible twos but I am pretty sure the terrible threes are among us. I was thinking tonight about the fact that he is only going to be this little once and I am just so so thankful to have him.
That is all I can think of for tonight.
Friday, April 5, 2013
We met with the hand surgeon yesterday and she got some more x-rays of Anton's right hand. His thumb is not dislocated but is broken :( I was so sad to hear that but she said it is healing well. We have no idea how he broke it but she said the bones in his hands are tiny so it wouldn't take much to dislocate or break them. We had been wrapping his hand in coflex (it is a stronger bandage) to hold his thumb in place every since he was in the hospital the last time and she said I can stop doing that now. She said he looked so much better than when he was in the hospital which was nice to hear.
Wednesday, April 3, 2013
When I was getting Anton ready for church on Sunday he said he wanted to wear his spider-man undies and I thought "why not?" so he got to wear Judah's spider-man undies over his diaper. He was so excited and made sure to tell everyone he talked to at church that he was wearing spider-man underwear.
We are staying pretty busy these days, between homeschooling and daily bandage changes there isn't really time for much else. I am enjoying life even though it is busy, I love getting to spend so much time with our kids (well most days I enjoy it :) )