Go Texan Day

We had a wonderful Friday celebrating Go Texan Day here in Houston. James Thomas loves all the songs and bubbles and Tiny Tots and Tunes up at church. Elizabeth Sparks was in town visiting her family so after music Melissa and I headed over there with the boys. We had a great lunch while the boys played. James Thomas loved chasing John Marshal around the house. Lauren came over too and we got lots of cute pictures. It was great to visit and catch up. After a few hours of fun James Thomas had a complete melt down and conked out on my lap. He was so tired! After our Monday trip to the ER our week turned out great! James Thomas is filling so much better and is an active little boy.

Last night we celebrated Cliff and Sarah's engagement at El Tiempo. They are so happy and her ring is absolutely beautiful! Congratulations to them and we are excited to welcome Sarah into the family. My younger brother got engaged too last weekend and we can't wait to see them. A little shout out to Ty and Whitney. We are excited for you guys!! After years and years of being the only girl it will be fun to have two sister in laws join the fam.

We are off to a birthday party and then family fun. Tomorrow James Thomas is participating in the bible presentation at church so some of our family is in town. Another beautiful and busy weekend!

Below are the pictures from Friday!

Update

Once again I have gotten behind and have a lot to update.

First let me start with the BMT consult. James, James Thomas, and I all had blood drawn so we could get our HLA report. It took three pokes to get James' blood and it was his first time to see JT's port get accessed so it was quite the ordeal. The nurses were so sweet and really made us feel comfortable about the entire process. Then we met with a BMT doctor and she gave us a lot of information and answered every question we had. I really really liked her. She said that the bone marrow transplant is probably a definite thing for us, we will just have to wait until we have a sibling match and see how James Thomas does. We did have a little disappointing news. The doctor told us some kids can go 6 weeks without getting blood where James Thomas has to get blood pretty much every 2-3 weeks. He did make it 4 weeks once but hasn't done that again. She gave us books to read and said Texas Children's has done several DBA kids which is GREAT! I do feel confident using Texas Children's when and if we have to do this. We are praying praying praying that James Thomas' bone marrow kicks in on it's own and starts producing some red blood cells!

We had a great weekend and a nice visit from Nancy. She came in town Saturday and offered to babysit Monday while I went to the dentist. When I got home from the dentist Monday, James Thomas started running a fever. I called the Cancer Center and they were completely booked for the day so they sent us to the ER. We spent 7.5 hours in the emergency room!!!!! It turned out that James Thomas has a double ear infection. The reason we go to the ER is because of James Thomas' port. When they get a fever the doctors really worry that they could have a bacterial infection through the line. This is what happened to us in December. As much as I hate spending my day in the ER I know it is important to make sure he is o.k. He is doing great now and growing up so fast.

James Thomas can now pull up on his feet. James went in to check on him Sunday morning and he was standing, leaning over the edge of his crib. We had to lower the crib right away. I couldn't believe it was already time to lower his crib! Where has the past few months gone? Before we know it he will be crawling and I will be chasing him around the house.

Below are some pictures from the past week. I went to Bush Elementary on Friday and had a wonderful visit. We went to the park on Saturday and had a blast! All and all we are doing really well. I have been reading too many blogs about other children who are sick and some who aren't going to make it. I have been really down about all these sick kids and can't stop crying when I think about it. Please pray for all the families out there that are losing their babies. I can't imagine and I am in awe of their strength.

Emotional Few Days

So much has happened the past few days. It has been hard and sad. One of our good friends from church Toby lost his parents unexpectedly this past weekend. Our other dear friends Russell and Becca lost Becca's dad on Sunday. He was snowmobiling and died in an avalanche. Becca is pregnant with their first child. My heart is aching for these friends and their loss. I can't imagine if something happened to James or my parents. Please keep them in your prayers.

Another DBA family got some scary news this Monday too. Please read their story below.

"Hi everyone. Unfortunately I don't have good news today. I brought Maggie to clinic this morning for her labs and her retic count was still unchanged. I spoke with Dr. Fryberger for awhile and she said that Maggie is deemed a steroid failure and we start to wean her off tomorrow..in a week she will be off the steroids. This was obviously not the news any of us were hoping for.

Dr. F said the next step is that she is going to contact a Dr. from the West Coast who specializes in DBA and also the NY docs (she tried to do this today but they were closed for the holiday) and also transplant docs and find out their recommendation for Maggie. She told me today to prepare myself for the fact that Maggie WILL need a bone marrow transplant, it's just a matter of when. She also told me to prepare that they may come back and say they want her to go to transplant quickly. We are just praying that we can wait awhile..I know when we went to NY they said they would prefer to wait until age 3ish if they could..so I am really hoping for that or at least until after her second birthday.

The other issue we need to work on and get under control now is her iron...she would definitely not be even considered for transplant until we got that down a little bit. As of today her ferritin was over 3,000 (a normal ferritin count is about 20). The doctor here is going to talk to the other doctors about how we are going to treat this. There is the oral medication, ex-jade, but they usually can't put patients on it until they are 2 or 3. They are going to try to get it approved for Maggie (as long as it would be safe)..if that is not an option yet then she will need to start desferal. This is the pump option..we would need to put a needle under her skin 5 nights a week and she would be hooked up to a pump at night.

The other thing we talked about today is getting her back on a transfusion schedule and transfusing her at higher numbers. Her hemoglobin was a 9.8 today but they may still have her come in for blood at the end of the week. They said that her body could absorb more iron through her gut when her counts are lower because the body is tricked into thinking it needs more iron when the blood count is lower. So hopefully by keeping her hemoglobin higher she would absorb less iron.

I am feeling very nervous, scared and sad today. I was so praying these steroids would work so her body could get a break..but it was not meant to be that way. I know that my girl is strong and I know she can get through anything..I am trying so hard to be positive about everything.

I should be getting a call from our doctor here tomorrow or Wednesday after she has touched base with the doctors from other states..I will update as soon as I know anything. I know I don't need to ask but please keep us in your prayers. Thanks everyone..love you all."

I was so scared after reading this letter. I never dreamed a transplant could be needed so soon for a DBA child. James and I don't have a sibling match for James Thomas right now. There is so much to learn and understand. James and I had our Bone Marrow Transplant HLA testing and consult yesterday. I LOVED the doctor we met with but is is all so intense. I will post about that appointment later.

Again please pray for our dear friends and this sweet family. My heart is heavy for them all.
Today is a big birthday day for us!!! A special Happy Birthday to Grandma Tassie, Melissa Hollon, and Jim Colquitt! I hope you each have a wonderful day.




PS Today is Ash Wednesday and the start of Lent. No more SONIC drinks for me!

WRONG DAY

There was a miscommunication between James and the scheduler. She had us down for Feb. 16th and James had the 9th down. So, we got there and they wouldn't see us. That is o.k. we will go back next week. Just wanted to let everyone know we didn't get any information on bone marrow transplant yesterday. I will update next week!

Valentine's Playdate

Yesterday we had a great time at Mandi's house.  The kids got to decorate Valentine's cookies and play while the moms got to catch up. James Thomas loved playing with Hannah Cole. I think he might have a little crush!!!!   James Thomas and  I walked to the party which was great!  I am so blessed to live close to so many wonderful friends.  

Today James Thomas, James and I are going to meet with the Bone Marrow specialists at Texas Children's.  I am a little anxious to hear what they say PLUS they have to draw blood from all three of us.  I really enjoy the honeymoon phase of DBA right now and hope the next few months go by very slowly.  

Future Baylor Bear

Yesterday Dad and James Thomas cheered on Baylor when they played the Aggies in College Station.  It was a great game but didn't quite work out for the Bears.  Our little guy looked so cute in his Baylor gear that I had to post a picture.  We have had a great time watching Baylor play basketball this season and hopefully they will continue to do well so we can watch them in the NCAA tournament.  

We have had a great weekend.  James' mom is here and has played with James Thomas nonstop.  We love when we have family in town.  We keep trying to talk one of our parents into moving to Houston!!!!  I guess time will tell.  We are about to cheer on the Saints in the Super Bowl and eat lots of yummy foods!    Have a great week!   

Love,

8 months old

James Thomas is 8 months old today! Where has the time gone??? These past eight months have been the most life altering but amazing months of my entire life. James and I are so thankful for JT and we cherish each and every month with him.

We have had a great week. This past weekend we went to Austin and saw lots of family. We had lunch with the Garretts and then went to my Grandmother's house to celebrate her birthday. Lots of them had never met James Thomas so it was a very emotional and special weekend. James and I had some fun too going out with my brother, Sarah, and the Heersinks. It is always nice to get out and have grown up time without the baby!

This week we spent two days at clinic because James Thomas had a fever. Anytime they have a line and get fever you have to have IV antibiotics. I knew it was just a cold because I have it too but they said we have to be extra careful with our little guy. So, we spent Tuesday and Wednesday at TCH. They accessed his port for the first time and James Thomas didn't even cry!!! I was very nervous for this day to come but it was easy easy easy! I am so proud of James Thomas and his strength! While we were there we met a girl who is on American Idol this season. She is a cancer survivor and was treated at TCH. I can't wait to follow her and see how she does. Pretty neat!

We are doing Tiny Tots and Tunes at Second Baptist. James Thomas loves all the singing and the bubbles. It is a lot of fun for him and great quality time for me.

James Thomas was diagnosed with DBA at 4 months of age and here we are 4 months later. These past 4 months have been a lot crazier than his first but we are doing great! James and I have learned more medical terms than we would like but we are going strong and fighting hard! The next four months should be fairly easy as we will just be doing transfusions and allowing his body to grow as much as possible.

I have posted some pics of JT today! I can't believe how fast he has grown. He is sitting up perfectly and trying to crawl. It won't be too much longer before I am chasing him around the house. I better enjoy the next few weeks or days!!!!!