He scores a 10!

We went to clinic today for counts and a transfusion. It went well with an easy finger prick and a lot of waiting. Then the nurse came and told me he didn't need blood. CAN YOU SAY THAT AGAIN PLEASE?????? He didn't need blood because his hemoglobin was 10.1! WOO HOO James Thomas. Mommy is so proud of your little body. His counts are still dropping but they are dropping at a slower rate. This is wonderful news because it means we can wait one more week before we get blood. James and I are so happy James Thomas' body is able to hold on to the blood a little longer than before. He has never made it three weeks without needing blood so this is a new milestone. All the other parents said we should go celebrate and get ice-cream. Maybe mom will have to eat some for you tonight!!!!

Ready for the weekend

We have had a great week!  No doctor appointments, no scares, just a calm uneventful week in January.  WHAT A BLESSING!!!

Earlier this week Melissa and I watched Elizabeth Cole while Julie had some things to do.  Nancy got me a double stroller when I was pregnant to use for Luke and James Thomas and to have down the road when our family grows .  Well, we got to use it for the first time with Elizabeth and James Thomas.  The weather was beautiful so Melissa and I took all three kids on an hour walk.  It was great!  My dad stopped by the house for a few minutes on Thursday and got to see James Thomas rolling back and forth and trying so hard to army crawl.  I can't believe how fast these little guys grow up.  I think my dad was very impressed.

I have gotten plugged in with some other Diamond Blackfan Anemia moms.  I have read their blogs and followed them on facebook.   Many of them have done blood drives.  It is a great way to collect blood for the American Red Cross and bring awareness to Diamond Blackfan Anemia.  James and I are going to have to try and put one on this summer in honor of James Thomas.  So keep an eye out for more information about that in a few months.  There is also a camp for families every other summer in Maine.  Hopefully, we can make it this summer and meet some of these great people. 

SPEAKING of blood:  James Thomas goes in Tuesday for another transfusion.  Since November he has been able to receive blood specifically donated for him.  We are so thankful for these individuals who are faithfully donating.  Each time they give blood they are saving James Thomas' life.  What an awesome gift!  This will be the first time we access his new port so pray that goes smoothly.  We meet with the Bone Marrow Team at Texas Children's in two weeks, they are going to get our HLA types and give us information on this risky procedure.  The more I read about bone marrow transplants, the thought of James Thomas having to endure one scares me.  We are preparing for this to happen but at the same time praying for another way to cure our precious boy!  That is all on the medical front.   

I am excited for the weekend!  We were so spoiled when James finished up the Bar stuff and didn't start work because he was home all the time.  So, I get real excited for the weekends when we are all together as a family.  Enjoy yours!!! 

Great week

We are having a great week!  We had our post surgery appointment yesterday at TCH and it went great!  We met with our new hematologist again and I absolutely LOVE LOVE LOVE her.  She is answered prayer.  James Thomas is not having any sourness from his port and the incision is healing up beautifully.  Hopefully we won't have to use it for another week and a half, that is when he is scheduled for his next transfusion.  Medically things look awesome this week!  We are very thankful. 

James Thomas is a perfect seven month old baby.  I can't believe how fast they grow.  He is sitting up perfectly and eating lots of baby food.  He loves bath time and is smiling nonstop.  He truly brings me such joy.  He is having a little trouble sleeping at night.  I don't know if it is the teething or getting to sleep with me when in the hospital because he wakes up several times a night.  When we put him in the bed with us, he is great, but this is not a habit we want to start.  It is so hard for me to let him scream and cry and not run into his room.  James says we will start that this weekend.  I know it is a must because I am starting to get really tired.  Who knows if I will ever sleep again!!!  

Hopefully things stay very calm and dull around here.   

Never a dull moment

A lot has happened since my last post. We had a great time at the Jones' house having dinner and watching UT. Around 8:30 Melissa and I notice that James Thomas was starting to break out into a rash. His entire chest, neck, and face was and still is covered in hives. I started freaking out, thinking any minute his throat was going to close up. We spend the second half of the game on the phone with Anna (Melissa's sister who is a nurse), the on call doctor at Blue Fish Pediatrics, and the on call Hematologist at Texas Children's. They all say the same thing to give him benadry and watch him closely. If he starts showing any signs of difficulty breathing head straight to the ER. I am stressed out of mind just waiting for James Thomas to gasp for air or start coughing. SO, James Thomas ends of sleeping with James and I so that I can monitor him and give him another dose of benadrly at 3:30 am. This morning I realize he is not going to stop breathing on me but he still has a bad rash that is bright red and not going away. I call Blue Fish and head up there for a 9:45 appointment with Dr. Pielop. What was I thinking when I said we might get a break from the doctors??? Oh well, at least he is ok going into the weekend. They realized that he was allergic to the betadine that they pour all over them before surgery. I have to give Melissa's sister a shout out because she guessed the betadine the second she saw him. It is nice to have an on call nurse 24/7 with Anna. He is doing o.k. today, a little fussy but that could be soreness from the port. Below are some pictures from last night! Melissa has always said EB babies can turn on a dime and that is why there is always a constant stress. I saw that happen first hand last night with James Thomas and it is scary! Have a great weekend and so sad UT lost!



     JT in his new tub night before surgery.
    Rash James Thomas got from betadine.
The heart bandage covers his port!
Luke waiting for the game to start!!
       The Garretts cheering on Texas!

Successful day

Thank you so much for all your thoughts, prayers, and support. Today went perfectly and we are back at home. James Thomas went into surgery around 11:00, came out at 12:15, and I was with him by 1:00. They said he was great and everything went just as planned. Our awesome new hematologist called to check on us, which I love and we almost got away with no appointments for three weeks!!! Can you believe it? Then they realized we have to come in next week to do a post operative appointment but that is it. James Thomas needs to get his second round of the flu and H1N1 vaccine but as long as he stays healthy we won't be living at Texas Children's like we have been. A true blessing!!!! We are so thankful for all the wonderful doctors, nurses, and other healthcare professionals who take care of James Thomas.

We are about to walk over to the Jones to have a yummy dinner and watch UT vs. Alabama. Cliff and Sarah are in California cheering on the horns so maybe we will spot them on TV. James Thomas has a UT onesie from Cliff and Sarah that he is wearing. GO HORNS GO!

Stay warm tonight and this weekend!

Lots of love,

Decisions Decisions

It has been an agonizing 24 hours. We have been trying to decide if we want to put the port a cath in tomorrow. It is such a tough decision. James and I really don't want to put James Thomas under general anesthesia because he is only seven months old. However, we don't want every transfusion to be painful and stressful either. Yesterday they were able to get the IV in with only one poke which was great. We gave him the numbing cream but he still screamed the whole time. I really don't like either of our options but we have to pick one. So, as of now we are going into surgery in the morning. We have to be there at 7:30 and his procedure will be at 9:30. They said it is quick and doesn't take too long. Please pray for the doctors and James Thomas tomorrow. Tomorrow can not come and go quick enough.

Big week

We are finally home and finished with Christmas. We had a wonderful time visiting the Elder, Garrett, and Walston families. We were once again showered with lots of gifts and love. James and I had an awesome time ringing in the New Year with the Heersinks and Hoyts as well as visiting lots of friends in Dallas. But, now we are back and gearing up for another big medical week. Today James and I had an appointment that was very informative. Tomorrow James Thomas goes in for labs and a transfusion and we will also get information about his surgery on Thursday. Tomorrow will be our first experience of receiving a transfusion without the pic line. This means they will have to put in an IV which has not been easy in the past. In the hospital they blew two veins before they got one to work. James Thomas screams like crazy and it is not a fun experience for me. I keep reminding myself that he will not remember any of it!!!! On Thursday James Thomas is going into surgery to have a port a cath put in his chest. This is a type of central line that will hopefully not get infected. The port is completely under the skin and has to be accessed when used. This protects it from getting an infection like we got from the pic. However it is a bigger ordeal to put in place. I am so nervous about it for some reason so I ask for your prayers this week. I know he will be fine but the thought of him being put completely under and have his chest cut open makes me so sad. I know it will make future transfusions so much easier.

I have had a few DBA moms contact me which has been awesome! The more I can learn from them the better. However it also opens my eyes to what is going on out there. I ask you to pray for a little girl named Chloe. She had complications with her Bone marrow transplant and is suffering from terminal liver failure. Please keep her family in your prayers as they are asking God for a miracle. I can't imagine what they are going through. If you want to check out their site go to

www.caringbridge.org/visit/chloemurphy