Thursday, November 26, 2009

Thankful this Thanksgiving

I hope this finds you all with full bellies and blessed hearts.  Today is a wonderful day to reflect on the things we are thankful for.  This Thanksgiving I am so thankful for my precious son, husband, family and wonderful friends.  The gifts and cards keep coming to our home and it is amazing to see how much people care.  The out pour of love and support truly makes me realize the important things in life.  We may not have all of life's finest possessions but one thing we know is that we are loved and prayed for daily.  These things are truly wonderful and so we say thanks for each of you.  Happy Thanksgiving!

This evening we went to my aunts house so that my dad's family could meet James Thomas.  James Thomas got to meet his Great Granny who will be 97 on Monday!  It was wonderful to see all of them and wish my precious Granny a happy birthday.  She is a beautiful woman and doing great!!

The rest of our trip was wonderful.  I am posting some great pictures!!!!  My dad drove in Manhattan and that was quite an adventure.  We paid the high price to park and walked around awhile.  James Thomas made his first appearance in FAO Schwartz and we bought him a few things.  We had a great time!  Like I posted before the doctors here are amazing!  Diamond Blackfan is their specialty and they taught us a lot.  We now have to wait for some of our blood tests to come back before we know anything about gene mutations.  I am so glad we went up there.  I look forward to our yearly visits.  James Thomas was amazing on the flights home and I am so proud of our little guy.

I need to finish picking up my house and unload the dishwasher.  As we enter into this Christmas season I hope you cherish each day and remember the important things.  Jesus' birth was the best gift we ever received and He is the rock of our life.  I can't wait to celebrate his birth this year with James Thomas!!!

Tuesday, November 24, 2009


I apologize for the delay in posts. We have had a busy couple of days getting ready for our trip to New York and trying to find out everything we need for our blood donors. Thank you to everyone who offered and we are thankful for your generous gift. My Houston donors, we will be getting you all the information next week.

We are in New York meeting with Dr. Vllachos and I LOVE her. I would do anything to bring her to Houston with us. She and her team spent four hours with us yesterday. We talked and talked about EVERYTHING! I learned so much about DBA yesterday and the road we are traveling. Some of the news was very encouraging while other parts were heart breaking. I will post more information when we return later in the week. Today we are doing a lot of blood draws, even my parents have to give blood (I don't think they realized that when the offered to come with me, haha). They are so thorough and detailed, it is AWESOME!

Back tracking.....James Thomas did fantastic on the plane. I was very nervous about the flying but in the end it went perfect. We are hoping and praying for the same results Wednesday. We are actually staying at the Ronald McDonald House across the street from the hospital. Here is a link if you want to check it out. It is very nice and the people are friendly but it is a very strange feeling to be here. Sometimes it seems like we are dreaming.

I have to go get ready for our day at the hospital. I will update more and attach some pictures soon. I forgot the adapter at home but I have gotten some great shots! Hopefully we will try to make it into the city late this afternoon! Love you all and thanks again for being apart of our journey.

Friday, November 13, 2009

B+ blood donors needed

We are finally learning all about James Thomas' condition and what we need.  James Thomas will need 4-6 consistent donors to give him blood regularly.  His blood type is B+.  James has been working with the Gulf Coast Blood Bank and Texas Children's to get it all worked out.  Whomever decides to donate to James Thomas will have to give blood every 8 to 10 weeks.  We will set you up with his ID number and everything else you need.  It is really important for James Thomas' body to receive the same blood.   It must be donated to a Gulf Coast Region Blood Center in Houston area, Conroe, College Station, Nacogdoches, or Lufkin.  If you might be interested in doing this for our son PLEASE contact me at  I can give you more specific details before you make a decision.  

We will praying for James Thomas' donors as they will be his lifesavers.  

Wednesday's appointment

Sorry for the delay in updates but it has been busy around our house.  Let me fill you in on what we have been up to.  Last weekend Jim and Nancy were down.  We had a GREAT weekend together.  We love having family down to visit.  

Wednesday we headed back to Texas Children's for the day.  We met with Dr. Lakshmi and definitely felt more connected with her.  I feel a lot better about building a relationship with her.  I know time will allow it to grow and get better.  Thank you for all the support and prayer in this area.  We found out a lot of information and got a lot of questions answered.  The labs came back and diagnosed the gene that mutated.  This is good news because now James and I can be tested to see if this was passed down to him or a random mutation.  We are PRAYING for a random mutation.  We discussed steroid treatment with her and she still wants to begin them at 6 months.  James and I really want to wait longer so this is a very GREY area.  We will hopefully get some more information before the 6 months get here.  I am so nervous about starting steroids and with each day that passes I know the time is coming to begin them.  I really need prayer in this area.  We talked a little about the bone marrow transplant in the future but that is still such a risky procedure that I know nothing will happen anytime soon.  

After our appointment we headed to the transfusion/chemo area for a transfusion.  His levels had dropped down into the 6s and the transfusion  was a must.  He was an amazing little boy and did great.  It takes about 3.5 hours to complete it so we had a very long day.  Our nurse Ashley was SUPER!  She is 28 years old and made the day so pleasant.  I am really thankful fo the great staff up there.  He has placed some wonderful people there to work with all the families.  Some of my new friends were there again and we got to visit more and bounce thoughts off each other,  THERAPEUTIC!  

Now James and I are desperate to meet with someone who is very familiar with DBA and aggressive towards treating this condition.  We may be flying to New York in a week or so to meet with them.  Please pray this works out and we can get some good answers.  The summary of Wednesday is that I was reminded how serious James Thomas' condition is.  We will be at the hospital at least once a week for the rest of his life unless we find a cure for him.  I want the very very best for our sweet boy and it is frustrating that there is no way to heal him right now.  Hopefully New York will bring some peace of mind to us.

James' dad and granny are here with us right now.  It has been nice to have company and get out of the house a little bit.  Granny, Melissa, and I are off to the Nutcracker Market this evening!  Hopefully we will find some great things.  I have not bought one single gift yet!

I can't believe the holidays are just around the corner.  We are doing our Christmas card pictures tomorrow with Summer.  This Thanksgiving and Christmas will be extra special as we celebrate it with James Thomas for the first time.  We have so much to be thankful for!

Love to you all,

Friday, November 6, 2009

It's official!!!

We got the final results in yesterday and James passed the BAR exam! I am so excited for him and all our law school friends. It is such an excited time in James' career world and things are going so well! We were able to celebrate last night which was GREAT! My dad was in town for a hearing so he offered to stay the night and watch James Thomas. We had a wonderful time down town celebrating with everyone. I am so so so proud of James!!!! It is so nice to be a part of the working world.

James Thomas is doing great! We went to Bush Elementary yesterday and got to see all our friends. It was nice to get lots of hugs and see the faces of the wonderful people who have been praying for our sweet boy. He was a hit! Thank you again to everyone up there. You guys are awesome!

Gramma and Pawpaw (Jim and Nancy) are coming to Houston today! We are excited to see them and celebrate with them. We have so much to celebrate: no transfusion Tuesday, James passing the Bar, etc. We have been so blessed by family coming to help out and see us. We have an amazing family. It reminds James and I of the big shoes we have to fill.

Quick thought from my devotional book for November 5th.

Put more energy into trusting ME and enjoying My Presence. Don't let your well-being depend on your circumstances. Instead, connect your joy to My precious promises:
"I am with you and will watch over you wherever you go. I will meet all your needs
according to My glorious riches. Nothing in all creation will be able to separate you from
My Love." -Jesus Calling by Sarah Young

Wednesday, November 4, 2009

Happy 5 Months James Thomas

Today is James Thomas' 5 month birthday.  A LOT has happened in the past five months.  Even with the stress and sadness it has been the best five months of my life.  James Thomas is a true blessing and we can't imagine our lives without him.  He has grown so much and continues to develop and get bigger every day.  TIME FLIES  Speaking of birthdays:  Happy Birthday to our friend Courtney, she and I are 5 days apart.  We are praying for her as she and Chris try to expand their family.

Today was a great day because James Thomas did not need a blood transfusion.  We are so happy and proud of his little body.  When we got there they immediately called for his blood and was setting us up for a transfusion.  I asked them if we could check his levels before the transfusion and sure enough.....8.4 was his hemoglobin.   This is below the normal range but they don't transfuse until they get below 8.0.  The nurses were so excited for him.  It has been two weeks since his last transfusion.  PRAYER is working!!!  I think babies usually have to be transfused more frequently but not James Thomas.  We aren't scheduled to go back until next Wednesday.  He will for sure need one then but three weeks is AWESOME!  If he can keep this up we may be able to convince our doctor to delay steroids.  I can't tell you how excited we are.  GOD IS SO GOOD! 

I met some families today in the transfusion / chemo room.  Caroline is an eleven year old girl with AML (acute mylogenous leukemia) who was receiving chemo today.  I talked to her mom for two hours while we were all waiting.  SHE WAS INCREDIBLE!  Her faith and strength for her daughter was awesome and it is great to have a friend up there.  She is a teacher in cypress fairbanks and being the small world it is, she knew one of my sorority sisters' mom (Mrs. Schmidt) and taught with another sorority sister (Ashleigh).  I look forward to seeing her again next Wednesday.  Caroline receives chemo five days a week for five weeks and then gets a two week break to just repeat this again and again.  Even with all this going on Caroline has the biggest smile and is a light in the room.  I ask that you all say a little prayer for her tonight because she is fighting a hard fight.

James has had a great three days of work and I am doing wonderfully.  I had lunch yesterday with sweet Natalie McCulloch and today Melissa and I did a little shopping in the Galleria.  Tomorrow I am heading up to Bush Elementary to see some missed friends.  We miss James tremendously but it was time for us to join the real world!  

This scripture was so true in my life today, "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." 
Psalm 15:13

Love to you all,    

Monday, November 2, 2009

Halloween weekend and more

  James & James Thomas before daddy left for work.
    Autumn feeding JT his bottle
Our sweet friend Avery!
Mr. Luke Alston Jones
       My TIRED little pumpkin!
      Our precious Grace Roe!
      Ian is the cutest skunk ever
     Halloween Breakfast crew!

James Thomas with me before I went out to celebrate my b-day
Best Friends Forever

Pumpkin Patch Day

We had the BEST weekend ever!  The week started with going to the pumpkin patch and Halloween fun at the Cole's house.  We celebrated my birthday this weekend and had a wonderful time.  Halloween was filled with fun parties and friends.  We had so much fun before James' first week at work.

James started work today!  We are so proud of him for working so hard in law school and getting such a great job.  I know he is looking forward to this new adventure and we know he is going to be a success.  We miss him dearly but are not going to be sad.  Instead we are just thankful for the past three months.  They have been awesome and not many people get to spend three months of no distractions with their new son.  It was wonderful!  We love you James!!!!

We have a lot of doctors appointments coming up so hopefully we will be learning a lot of new information.  I am going to my OB tomorrow to get some information for the DBA registry and talk to her about trying to have a sibling with a bone marrow match for James Thomas.  On Wednesday we are back at TCH for a blood test and probably a transfusion.  I can kind of tell his counts are dropping.  I am anxious to see what they are.  Next week we are at TCH for some ultrasounds and another appointment with our doctor.  We have been doing lots of research and have some good questions to ask her when we go.  We feel like we are starting to understand this condition and are ready to get the ball rolling.  We want James Thomas to be DBA FREE and we know God is working on a miracle to cure our son. Please continue to pray for complete healing for James Thomas.  We know that it will happen we just don't know when!   I will continue to update you as soon as we know anything.  Please pray for home health.  I have called them twice today and it is 3:00 and no one has come or called.  It is rather frustrating and I really need them to come so we can take care of James Thomas' pic line.  Besides that we are doing great.

I hope you each had a wonderful weekend and enjoyed the great weather!  We continue to be blessed by all your love and support.  Thank you thank you!