The Great Adventure

October-December

2012-02-01T16:14:00.000-08:00

I have been horrible at blogging and am sad because we have been doing some really fun things. I also want to have a place where I post my pictures besides Facebook. So, I am going to do a better job and try to post twice a month. That is not too much to take on, right?????

We had a wonderful Fall and Christmas holiday. It is my favorite time of the year. 2012 is off to a great start as well. The Garretts are in a wonderful season of life right now. We have lots to be thankful for and are filled with God's love and grace. Beware there are LOTS of pictures!

October: We got to attend our 3rd annual Halloween party at the Chambers home. James and I love dressing up and it has quickly become a fun tradition. This was our first year to trick or treat and we went around our new neighborhood. James Thomas loved trick or treating with Luke and Avery. And last we had our first train accident. James Thomas is slightly obsessed with trains. I hear him screaming one afternoon and sure enough he got the train wheels stuck in his hair. I thought we were going to have to cut those curls but as I was going to get the scissors he yanked it out himself. It was a close call!!!

November: We got to kick off November with Baylor Homecoming. What a year Baylor had!!! James and I bought season tickets and had the best time watching Robert Griffin III earn his Heisman Trophy. We spent Thanksgiving in Johnson City and James Thomas got to experience his first Lights Spectacular. Johnson City does an amazing job lighting up the entire town and having lots of entertainment for the kids. The hay ride was a hit.

December: I don't even know where to start with December. I kicked off the Christmas season with a cookie exchange party at my house. The best way to describe it is to say, "It was DELICIOUS!" I hope to do it again next year. We also made many trips to the Galleria, had lots of friends over to play and craft, and baked, baked, baked, and baked some more. My dad turned 60 in December and we had a nice party for him at Cliff and Sarah's. We hosted Christmas this year at our house. James' entire family was here off and on the week of Christmas. It was special to see everyone and celebrate Jesus' birthday! We ended 2011 with a trip to San Antonio to see Baylor in the Alamo Bowl and then off to New Orleans to ring in the New Year! I did not bring my camera to New Orleans but we had a great time with the Joneses. They were so nice to invite us and let us bunk up in their hotel room!

Fall

2011-10-27T10:18:00.001-07:00

We have had a really fun Fall! In fact it will take several posts to cover all that we have been up to. James and I got season tickets to Baylor Football and have had the best time driving up to Waco to watch several games. We even had a Baylor Football party one weekend to cheer on the Bears when they played KSU. The little boys had more fun playing outside than watching football. They were so cute to watch play. We are excited to head up to Waco next weekend for Homecoming.

We have also made several trips to the ZOO! James Thomas LOVES all the animals and riding the train. I think he wishes we could live on a train. I am starting to think Luke and James Thomas have their own language, kind of like some people say twins do. Every time they are together they spend half their time laughing at each other. They aren't talking or doing anything silly just smiling and chuckling uncontrollably. When James Thomas finally slows down at the end of the day he enjoys listening to train songs on my computer. They light his sweet little face up.

This morning was donuts with dad at school. My boys looked so cute and happy when they left this morning. And by the way it was wonderful not getting dressed this morning and waving goodbye to them as they pulled out the driveway. Mother's Day Out seems so much longer when I don't have to do drop off. I could get used to James taking JT to school!!!!

Vacation and start of school

2011-09-07T11:37:00.001-07:00

In August James decided to take a week vacation. With the big move this summer we decided to take it easy in Houston and then drive west to San Antonio for a small getaway. We stayed very busy while in town and had so much fun with Daddy home. On Monday we headed to the zoo for our own private viewing of the animals. (It was a private viewing because The first day of school in Houston = NO ONE there!!!) On Tuesday, Mandi, Avery, and Cate joined us at Noah's Ark Pool for one last water splashing day. The kids had so much fun running around with James. They were worn out. Wednesday we loaded the car and headed for The Hill Country Hyatt. It was perfect! Again with school starting back the resort was pretty much empty. We enjoyed the lazy river, kids pool, the play ground, fire pit, all with just a few other families. It was fun to visit with them and make new friends. On Friday we decided to head over to Sea World. We were worried James Thomas might be a little young but decided to take our chances anyway. SEA WORLD WAS THE BEST! They have a toddler section full of sesame street characters, rides, and activities. We went to the Shamu show and James Thomas was able to sit through the entire thing. This was really exciting for James and me. James even hit up a few roller coasters! All in all it was the best week ever! We ended our vacation with a night out with friends for restaurant week and then once again back to the real world. Isn't it amazing how quickly these fun times go by. Breaks my heart.

James Thomas started school that next Tuesday. This is his second year at MDPC. We absolutely love it there and have been once again blessed with great teachers. James Thomas has been three times now and is having a ball. It is great to see him grow and learn new things. PRICELESS!

Here are some pictures to tell our story!

This last picture is James Thomas' first day of school last year. Look at how much he has grown in a year!!!

Summer Fun

2011-08-27T10:48:00.000-07:00

I thought my camera broke mid way through the summer, but it turns out I needed a new lens. Now I have my camera back and have lots of fun pictures of James Thomas!

We started the summer off with James Thomas' birthday. We had a little party in Houston in May so on June 4th we went to Nachogdoches to celebrate and watch Michael graduate from high school! It was a fun weekend.

Birthday breakfast for champions!

First picture of James Thomas as a 2 year old!

Birthday festivities included lots of swimming!

James Thomas' favorite thing to do in the pool is to be thrown high!

Who doesn't love a naked, baby bum.

We got to see Papa on James Thomas' birthday too! Very special time.

We have stayed busy having lots of fun this summer. We took many trips to the pool, had lots of play dates, road Bailey like a horse, and even road the train a few times. James Thomas was lucky enough to be with Luke and Sam on their first train ride. I am sure that was just the first of many for our special friends! Oh and did I forget to mention a few 2 year old tantrums??? We had those too!

We also celebrated my sister in law, whom is also a dear, college friend's 30th birthday! It was a great night to celebrate such an awesome person!

Fun day with Mimi and Papaw

2011-08-07T11:32:00.000-07:00

My sweet parents have been dog sitting for James and me since July 4th weekend. We wanted to move, remodel, and get settled without worrying about Bailey and Daisy. This past week James Thomas and I drove down to JC to pick them up. My sweet mom rode back with us to Houston and then my dad came down after work to bring my mom back. They are so wonderful. Yesterday, we went to Memorial City Mall to ride the train, do a little shopping, and have lunch. I borrowed my mom's camera and got a few cute shots. My camera is finally fixed so I will have more pictures to share soon. Hopefully I can get some of the new house.

Waiting for the train!!

Choo Choo, All ABOARD!

My little conductor.

Our last family picture in front of our old house. (Daisy wouldn't cooperate.)

My first home! So so many memories.

We've MOVED!

2011-07-19T13:49:00.000-07:00

After 6.5 years we took the plunge and decided to put our house on the market. It was bitter sweet leaving our first home. We moved into the Rincon house in November of 2004, just a few days before our wedding. We found out we were pregnant in this house and brought our precious son home here as well. James and I have shared such wonderful memories in this house and it was a lot more difficult than I expected shutting the door and driving away for the last time. But, at the end of every chapter, you must start a new one, and we are super excited about our new home. We have been in the new house a little over a week and slowly it is all coming together. We did lots of painting and a few remodel projects so it has been crazy, but I think we are beginning to see the light at the end of the tunnel. We are super happy to be reunited with the Joneses! We do not live across the street from them like before but we are in the same neighborhood. Luke and James Thomas are very happy about this. Many of our new neighbors have come to meet us as well and we look forward to getting to know everyone better. It is a very exciting time!

James Thomas is doing amazing medically! Two months ago we had a little set back when his counts started to drop. We doubled his dose and was able to stabilize. Last time we did labs his counts had even gone up a little. We haven't tried to lower them back down yet but we go see Dr. B on Friday. I am thinking everything will look great and we can discuss a taper schedule. I have absolutely no complaints right now. James Thomas is an active little two year old and having a great summer. He just got back from a week at his Mimi and Papaw's house. My parents kept him so I get some unpacking done. He had a blast swimming, feeding horses, chasing kitties and just playing. I don't think he asked for me once! :(

My heart has been really heavy for all those families whose kids are not doing well medically and are losing their battles. I just read the blog of a little boy named James who died from a brain tumor this weekend. I am so sad for his parents and can not imagine if this ever happened to us. It really makes you savor each day and thank God the blessing of each new day.

I don't have any pictures right now but will post some soon.

2nd Birthday Party

2011-05-18T11:20:00.000-07:00

We celebrated James Thomas' birthday 3 weeks early this year at Noah's Ark Pool. I went to book his party in March and crazy enough the entire month of June was already completely booked. That is the beauty of a 2 year old, they have no idea when their birthday really is so May 14th seemed like a perfect day! JT had a blast splashing around and playing with great friends. The day was perfect and so much fun! I can't believe my baby is almost 2 years old! Where has the time gone?

Medically things are kind of iffy right now. James Thomas has been on steroids since late July and they have been working beautifully. Three weeks ago we had our first dip in his hgb. He was still in the normal range so we decided to leave everything alone and check in 2 weeks. Last Friday we went in and his hgb had dropped more, his retic was 0.5% (this is the very low end of the normal range), and for the first time his platelets were below normal. I just had an appointment for labs but Dr. B came out and talked with me in the transfusion area. We decided to raise his steroid dose and have an office visit this Friday. We are really nervous about all of this right now. We really hope his retic will go up by Friday. Even with all this going on James Thomas is still doing great. He hasn't missed a beat and is a very active little boy! We really couldn't ask for more from him. He is a true blessing!!!!

I will update on Friday after our appointment.

23 months

2011-05-03T14:20:00.000-07:00

James Thomas is 23 months today! I can't believe next month he will be 2 years old. Where has the time gone?
Everything has been wonderful at our house. James Thomas started swimming lessons on Monday and absolutely loves it. I can't wait for him to get more comfortable in the pool. He is very into animals and trains these days. He knows lots and lots of animal sounds and loves to say "ALL ABOARD" any chance he gets! It is fun to hear him learn new words every day.

Medically he has done fantastic. He has not had a blood transfusion since last August and we have been steadily lowering his steroid dose. This past week we went in for labs and his hgb dropped 2 points and his retic was pretty low. Everything was still in the normal range so we decided to leave all his meds alone and are going back next week to recheck. Praying that he is just leveling out and nothing else. Our doctor didn't seemed concerned but didn't want to wait too long to check again. She knows best so I refuse to worry and just enjoy this time!

We have our house on the market!!!! James and I have been in our current home since we got married and the past 6+ years have been wonderful. We have so many amazing memories in this house but we feel it is a good time to move forward. We actually had a new house under contract but it fell through after inspection. I was a little disappointed but trust that we will end up exactly where God wants us to be. Buying and selling a home is a really exciting / stressful time. Never a dull moment around here.

That is all for now!

Unexpected trip to the hospital

2011-02-09T10:47:00.000-08:00

What can I say? We went from a fun night of watching the Super Bowl, to a normal Monday, to finding ourselves in the ER, and being admitted back on the 9th floor. James Thomas came down with an awful virus that his little body just couldn't fight off. The doctor told us today his little body went into shock and that is why we have been up here getting fluids, meds, and being observed. We are scheduled to come home today, pending his cultures still look good at 3:00. We all anticipate no problems.

I have to be honest that I knew James Thomas was more likely to catch colds because he is on steroids but I had NO clue his body is not that capable of fighting them off. Our wonderful hematologist came down to visit. She apologized for not preparing me for these situations and giving me instructions on what to do. They are writing us a protocol that we are to follow for the next time he comes down with fever or vomiting. NEVER A DULL MOMENT!

I have great news to report. His hgb today was 12.4! On Friday it was 13.9, and Monday evening it was 12.2. They warned us it could be even lower because he was so dehydrated. I was anxious to get the results this morning but PRAISE God his body is doing great! When we leave we should be back on our normal doses and good to go!

Elmo is coming to the Pi Phi library today at 2:00 to visit the kids. We are going to see if we can get permission to go. I think James Thomas would LOVE it. Once again we are so impressed with the fantastic doctors, nurses, and all we have come in contact with up here. We are so thankful to live in Houston with such a great hospital.

I'm Back!

2011-01-20T10:10:00.000-08:00

My computer has been broken for the past month and I finally got it fixed. It is amazing how life changes when something like your computer is taken from you!!! My computer also has all my pictures saved on it. I was really worried about losing them so lesson here is make sure they are saved on a disk or zip drive too. I will be doing that tonight!

We had a wonderful Christmas. This was the year to spend it in Johnson CIty with my family. Cliff and Ty got married this year, Reid has a serious girlfriend, so there were some new additions to the family. The more the merrier! James Thomas got so many new toys. He was really excited when he climbed down the stairs on Christmas morning. It was really special for James and me.

Health wise James Thomas is doing AMAZING!!! He had his port a cath removed on January 5th. The port was a true blessing this past year. It made transfusions and the many many many blood draws bearable. He is such a trooper. However, with the port anytime you get a fever you have to go to the hospital and get IV antibiotics. James Thomas has not received a transfusion since late August so James and I felt pretty confident that it was time to say goodbye to the port. The surgery went smoothly and James Thomas did great. They wheeled him back to the Operating Room in a wagon. He was so brave! He did have another major reaction to whatever they use to disinfect their body. We told them not to use iodine but he is allergic to it all I guess. Hopefully there are no new surgeries in our future.

This week James Thomas got his first fever for the year. I was nervous about him still responding to steroids when he was sick. We went in for a cbc and his body had NO TROUBLE fighting the infection and making blood. I think his hgb was 13.2 and he was sick!!!! PRAISE GOD for this blessing. We were thrilled and so proud of our little fighter.

COOKBOOKS COOKBOOKS COOKBOOKS! Thank you again for ordering so many cookbooks. I know I told you they would be here in January but it looks like it will be February. I will ship or deliver your cookbooks as soon as I get them. I have seen a picture of the cover and it is super cute. I will try to upload it this afternoon. If you have not ordered one it is not too late. They are still taking orders to raise as much money as possible for the DBA foundation.

Besides being Barney obsessed at my house we are doing wonderful. This is a great season for us.

Camel Ride

2010-12-17T11:59:00.001-08:00

Last weekend Nancy came in to town for a visit and to watch James Thomas so James and I could go out. Nancy stumbled across this Christmas festival at Christ the King Church and we decided to take James Thomas up there to explore. We got to ride a camel, pet lots of animals, make arts and crafts, and lots of other fun Christmas activities. It took me 30 years to go for a camel ride but James Thomas can check that one off the list at 1 year old!!! He had a great time and his new favorite word was camel. The rest of the weekend all we heard was camel, camel, camel.

That night our neighborhood put together a fun Christmas evening. Down at the park they had santa, smores, popcorn, and "The Polar Express" was playing on a projector. JT did not want anything to with Santa so we didn't stay long. Maybe next year.........

Some of my favorite things.....

2010-12-17T11:15:00.000-08:00

First of all I have to say that I have been the worst blogger ever. James Thomas is a very active 18 month old who keeps me on my toes and really busy. I have just organized our photos and now I am back. I have lots of posts to upload over the next few days.

James Thomas discovered the train at Memorial City Mall last week and he is in love! We have been three times already and are planning to head back again soon. It is so fun to watch him explore and fall in love with new things. This is a very exciting time in his life. I just wish I could put one of those trains in my back yard!!!!

Thanksgiving

2010-12-01T16:48:00.001-08:00

Unfortunately I don't have any pictures to post because I forgot my camera this Thanksgiving weekend. BUT, we had a wonderful time celebrating this great holiday with family. We drove to Ft. Worth to see the entire Garrett family. It was awesome to meet relatives I had never met and to see all the ones we love dearly. James Thomas was perfect and I don't think things could have gone any better.

James and I had a fun Black Friday. For the first time ever we ventured out with the die hards and tried to get us a cheap TV. We arrived to Target at 3:30 thinking that was plenty of time to get in line for the 4 a.m. opening. UMMMMM, we were wrong. There was probably close to a 1,000 people in front of us. We did meet a great young mom from Minnesota who was standing in the freezing cold in flip flops! We unfortunately did not get the door buster deal but we did walk away with a new TV for our living room. We then made a quick stop to What a Burger and crawled back in bed all by 5:15 a.m.! It was pretty exciting. I can honestly say it was an experience like no other. You probably won't catch up ever doing that again but hey you only live once!!!

We did our second annual Christmas card photo shoot with Summer. She is absolutely amazing and did a beautiful job. I was really nervous before our appointment because James Thomas does not always cooperate and is at a very difficult age. He is also puffy because of the steroids so I thought all of this was going to lead to the biggest disaster ever. Summer was AWESOME! She came with puppets, balloons, you name it she had it. Her work is fantastic and that is all I will say, so you will have to wait until you get our card in the mail.

James Thomas is doing well. We go in for labs on Friday. It will have been two weeks so we are praying for great numbers. He is full of energy so I am expecting nothing less that greatness! I have sold lots of cookbooks! THANK YOU THANK YOU to all of you who are supporting the DBA foundation and ordering one. It is not too late. I think we have two more weeks to take orders.

Our house is decorated and we are enjoying this wonderful time of year! I pray each of you reading this is doing the same.

Recipes for Research Cookbook Fundraiser

2010-11-17T11:48:00.000-08:00

Recipes for Research
A collection of recipes from individuals with DBA, their family, and friends!

Cookbooks will be available in January 2011.
Place your order now!

Please join our DBA Community in raising money for the Diamond Blackfan Anemia Foundation (www.dbafoundation.org). Cookbooks are $17 each (price includes tax and all shipping costs) and information on DBA, the DBA Foundation, over 400 recipes, and helpful hints and measurements. This money will go towards DBA research and raising awareness of this disorder. Let’s aim big and raise some funds for this amazing cause! There are research studies just waiting for funding! Let’s get started!

There are two methods to pay for cookbooks. You can order on our paypal button or mail me a check.
Make checks out to:
DBA Cookbook Fundraiser
Mail to:
Lindsay Garrett
12422 Rincon Dr.
Houston, TX 77077
Or I can pick them up from you, whatever is easiest.

There are lots of recipes from James Thomas’ family and friends! I know some of you preordered but that was just to get an idea of how many cookbooks were going to be sold. Please reorder your cookbooks through paypal or a check to me. I am not going to order any cookbooks that aren’t paid for so again PLEASE don’t assume I am ordering you cookbooks just because you emailed me with a preorder. Thank you from the bottom of my heart for your support. If you have any questions or comments email (lindsaywgarrett@hotmail.com) or call me at 281-841-5170.

Food for thought: This Thanksgiving as we all reflect on all we have to be thankful for, like our health, think about buying a cookbook to help out those who daily struggle and battle with DBA!

Happy Holidays from our chunky monkey!

Halloween Weekend

2010-11-10T17:23:00.001-08:00

I know this post is a little late but we have been so busy around here. We had a wonderful Halloween weekend which is also my birthday weekend!! I turned 30th this year and had a fun celebrating with family and friends all weekend long. James and I got out Friday and stayed at Hotel Zaza which was perfect. I still can't believe I am 30!

On Saturday we went to Dewberry Farms with my parents. The weather was great and we had a really nice time being outdoors. That night we had our second annual Halloween Party at the Chambers. Everyone was dressed super cute and James Thomas was a monkey!! The kids had a blast and it was a good night. Baylor also beat Texas that night!!! GO BEARS! James was pretty much glued to the tv the entire evening!

The next afternoon we got to attend Miss Mackenzie's 2nd birthday party. Ashley did a fantastic job with her and it was the perfect way to spend our Halloween. James Thomas was obsessed with their lawn mower toy. I know what he will be getting for Christmas this year. We didn't trick or treat but instead came home and passed out candy! All around it was a great weekend! I just love this time of year.

Dewberry Farms

Halloween Party

Mackenzie's Birthday Party

DBA Cookbooks

2010-10-20T19:45:00.000-07:00

I absolutely hate asking for money or asking people to buy things but this is so close to my heart. So, I will step out of my comfort zone and ask for your help! One of the DBA mom's that I met and grew close to this summer is putting together a cookbook to raise money for the DBA Foundation. The DBA Foundation is a wonderful organization and has funded lots of medical research to help kids like James Thomas get better treatment options and hopefully, someday find a cure. They also put on the week at Camp Sunshine that James and I got to go to this summer. It was 100% free for the families and was a life changing week. They do so much good, that I have to ask for your help.

They are currently taking preorders to determine how many books to buy. They will run between $10-15 plus shipping. Here is the information I received:

*Ok friends,

*We have reached over 200 recipes in the cookbook and I am still inputting them with the help of some other gracious DBA moms! THANK YOU! At this time, I want to start getting an idea of how many cookbooks I will need to order. *The cookbooks will be hard covered, color cover, with 200+ recipes, some pictures & artwork, including information about DBA, DBAF, and research, and some other extras (recipe abbreviations, spices, measurements, helpful hints, equivalency charts, etc). The cost will be between 10-15$ (depending on # of cookbooks ordered) and they will be available in January if all goes smoothly. S&H will be determined once I know how much the book weighs. *

Please check out the DBA Foundation as well. http://www.dbafoundation.org/ If you click on the "contact" tab you will see a picture of James Thomas!

If you would like to order a cookbook or 2 please email me and let me know.

lindsaywgarrett@hotmail.com

I will collect money once I have an exact price. Thank you in advance for supporting our family and this organization that we love!

PS Thank you to all our family and friends who gave recipes. You were such a HUGE help. I can't wait to try all your recipes!

One Year Ago.....

2010-10-15T06:46:00.000-07:00

today, our world got turned upside down as I heard the words "Diamond Blackfan Anemia" for the very first time. There aren't even the right words to describe all we have gone through and learned this past year. But one thing I know is that life is a precious gift that should be lived to the fullest. I have seen and met more kids with cancer than I could of ever imagined, spent way to many hours at Texans Children's Hospital, and learned more about anemia than I ever cared to know. This year we have traveled to New York to work with the most amazing DBA team in the world, flown to Maine where for the first time we were able to meet others with DBA & form the best support group ever, we have had a failed IVF cycle, and are in the beginning stages of a successful steroid trial. We learned that we have such supportive families, and AMAZING (not the right word) friends! I have learned to step out of my comfort zone and be more assertive when it come to James Thomas' medical care. And dealing with all of this has not put a strain on my marriage but has made me fall more in love with James than I thought possible. I know the only way this has all been possible is by God's love and grace. He has held us this year and now we are able to stand here better people, ready to face another year. I love my son, I love my life, and as much as I would do anything for him not to suffer or deal with all of this crap (excuse my language but it is what it is), I know James Thomas will come out victorious and exactly who God designed him to be! Here are some pictures taken a year ago today. James Thomas was so sick and pale. Look at him a year later, isn't it a miracle?!?!?!

When we entered the hospital on October 15, 2009 James Thomas had to receive 5 blood transfusions just to get his hgb to a safe range for surgery. He was literally dieing and wouldn't be here today without that blood. We will never know whose blood was given to him that week but we will forever be thankful. I know God knows who those donors were and I pray for extra blessings for them, for their lifesaving gift. James Thomas' now has designated donors who donate regularly. Thank you for your gift of life to our son! We appreciate it more than we can express and we will never forget or taken for granted what you do! SO HERE IS MY PLUG, let's all go donate blood. James has always been faithful in his donating of blood but me on the other well NOT SO GOOD! I am pledging now to donate blood this month, will you?????? Here is a picture of James Thomas' first blood transfusion.

This next picture was taken that same week and was probably transfusion #3, how could you not donate blood for a smile like that?

This last picture was taken at Camp Sunshine this summer. Everyone in the picture has Diamond Blackfan Anemia. Look at those beautiful faces. If you think about it, please say an extra prayer for them as they daily fight their fight!

James Thomas,
If you ever read this I hope you know how proud of you we are. God made you extra special and we thank Him for your precious life. You have taught us more than you will know and you are the bravest little boy! You are my hero! Keep up the good fight!
All my love,
Mommy

PS A little ironic we went to clinic today on the one year anniversary of this adventure.
10-15-09 CBC results
HGB: 3.0
Retic: 0.1%

10-15-10 CBC results
HGB: 13.2 (yes 10 pts higher)
Retic: 1.2% (this is in the normal range)

What AN AWESOME DAY!!!!!

Fun Filled Weekend

2010-10-10T17:39:00.001-07:00

We had a wonderful weekend full of FUN! On Friday we headed to Lake Limestone to meet up with Jim and Nancy. Saturday, James and I got up bright and early to go to Dallas for the Balylor v. Tech football game. It was at the Cotton Bowl and neither of us had ever been to the State Fair. We were so excited to eat fair food and walk around so after the game we got Fletcher's corndogs and funnel cake. It was unbelievable to see all the different types of fried food! Even though Baylor lost we had a GREAT time cheering on our Bears.

Then we headed back to the lake house. We got back just in time for an amazing sunset! This place is such a treasure and we enjoy every trip we make. James Thomas had tons of fun playing with Grandma, Pawpaw, and Auntie Crystal (one of Nancy's Sunshine friends).

We had a wonderful, lazy Sunday morning at the lake and then headed back to H-town. Our weekend wasn't over yet. We unpacked the car, loaded the wagon, and headed down to the local Catholic Church Fall Festival. It was awesome! There was so much food, lots of activities for the kids, crafts everywhere, just a great way to spend your Sunday afternoon. Plus all the money raised went to charity!!!

TO TOP IT ALL OFF WE GOT LABS DONE FRIDAY MORNING TOO..........HGB 13.6 and retic 2.1 This is amazing and a true miracle. We are lowering his dose a little over 10% and we go back again on Friday!! GOD IS GOOD!

2nd Annual Pumpkin Patch Party

2010-10-06T16:28:00.000-07:00

We had a wonderful day at the pumpkin patch and pumpkin party at the Cole home. I think we have officially made this a tradition!!! I love traditions!!! The kids were in awe of all the pumpkins at Memorial Drive Methodist. James Thomas thinks they are funny looking balls and keeps trying to pick up the ones I bought and throw them across our living room!!!

The weather was perfect and all the kids had a great time having lunch and playing outside! Fall is the best time of the year, especially in Houston!!!

Here are pictures from last year and this year. I can't believe how much the kids have grown. We also have one new addition to the group! (only 1 addition is pretty good for a year, right?) We are going to head out to Dewberry Farm sometime soon too. So many fun things to do this time of year.

2009 pictures

2010 pictures

Lots of pictures

2010-09-28T18:20:00.000-07:00

Sorry I haven't posted in awhile. We have been staying busy around here and LOVING this awesome weather. In fact we are off to the zoo tomorrow.

James Thomas has had two awesome weeks with his blood counts rising! We are so proud of his little body. We lowered his dose by 10% so Friday should be interesting when we go in. PRAYING for good labs!!!! Steroids have been so much better than transfusions. We really want them to work.

Luke and James Thomas playing with pasta. They look so big.

This is the only time you will see this but thought it was too funny. JT's nap mat was out for 5 minutes and look who decided she loved it. Sorry Bailey, I am not ordering you one.

I had the privilege of going to Bush this month and read to the 5th graders. These were the kids I taught my last year in 3rd grade. It was so much fun!!!! I miss you guys and can't wait to come visit again soon.

This was James' apron. SO CUTE! James Thomas is very serious these days and loves to organize books. I can't get him to stop and smile for pics anymore. What am I going to do?????

I bought these tablets that change the color of the water. We also got bath time markers; BATH TIME is so cool now!!

These pictures were taken today before school. The cool weather finally allowed us to wear some fun, Fall clothes. James Thomas was a hoot playing around this morning!! I love this little guy.

From Bad, to Better, to finally the BEST EVER!

2010-09-11T17:20:00.000-07:00

This week did not start out very well. On Tuesday James and I got the awful call from our IVF nurse telling us that I was not pregnant. Let me fill you in on the past few months. I started the whole meds process in July while we were at Camp Sunshine. Everything was going perfectly, I had 36 eggs retrieved, 30 fertilized, and 26 grew to day 3. On day 3 they biopsied them and sent them to Detroit for Dr. H to test. We had to wait until day 5 for our transfer. On day 5 all the embryos were doing great but out of 26 only 3 were HLA matches. This was pretty shocking for me but we only needed 1 so I was thrilled. They implanted the two strongest and I went home, was on bed rest for 2 days and waited for the big results. At the beginning of the cycle we were so confident it was going to work however this was not the plan. Tuesday was very sad but we have quickly learned that circumstances do not and can not affect our joy. We have so much to be thankful for and we will focus on that for now. This process was expensive, painful, and emotionally hard so we will wait a few more months to regroup before we try again.

We thought the week was only going to get worse because James Thomas was scheduled for a blood transfusion on Wednesday. He has been on steroids for 7 weeks and we have not seen a rise in his hgb. Our luck did change because James Thomas did not end up getting a transfusion!!!! His hgb stayed the same (which is still low) but it did not drop. To top that off his retic was really high. We decided to give the boy one more week to see if his hgb will finally rise and then if not we will do the transfusion. This was like a rainbow after the storm. I just knew he was going to need blood, but little do I know!! We are still hopeful and pray every night for a miracle but it looks like this trial is going to be a failure. He can't stay on this dose much longer and the fact that we have never had a rise in hgb probably means the second we lower his dose everything will stop working. This will be hard news for us but as of Wednesday things were looking better.

BUT the best part if this week was sweet Luke Jones' 1st Birthday party. This little boy is amazing and inspires me every single day. I will never forget when I heard Luke had EB and I researched the condition. I was heart broken, devastated, and had no clue what his little future held. But TODAY yes TODAY it was a great day. Luke was crawling around, eating birthday cake, smiling for photos, and melting hearts like always. He was surrounded by TONS of family and friends all celebrating an amazing little boy. Melissa did a fantastic job with his party and we all had a great time. Just what the Garretts needed to end this hard week.

Weekend at the Ranch

2010-08-31T08:22:00.000-07:00

Two weekends ago we packed up the car and headed out to our good college friend's ranch in Columbus. We had no idea what to expect but were completely blown away. There is a little piece of paradise off of 71 in the middle of no where that is truly amazing. Robin and Dave were the best hosts ever and we appreciate them inviting us. James Thomas had a blast and we can't wait to take him back next year. They have an air conditioned tree house, a beach, swimming pool, swings, tractors, you name it they had it. We also got to see some of our other great Baylor friends as well as meet new people. We are already excited about next summer so we can go back and stay a lot longer. Thank you Robin and Dave for an awesome getaway.

Mommy's Little Helper

2010-08-27T06:34:00.001-07:00

James Thomas LOVES organizing things and carry stuff back and forth over and over again. It is pretty funny to watch. The other day I was unloading the wash and not 5 seconds later I had a little helper. He had a blast putting the wet laundry into the dryer. I grabbed my camera so in a few years I can remind him that he LOVES doing laundry!!!!! It is so fun to watch him grow up and learn new things.

Gymboree

2010-08-25T15:59:00.000-07:00

We joined Gymboree when James Thomas was 11 months old and he absolutely loves it. The first time we went he cried when we walked in. He thought it was another nursery and that I was about to leave. Once he realized that Mommy wasn't going anywhere, he opened up and really dove into all the activities. He has progressed so well and I really think he is learning a lot from our time here. 3.5 months later I realize that I have never brought my camera to catch the little guy in action, so here are some pictures from Gymboree.

The last three pictures are of James Thomas practicing his flexibility at home. I just walked in the kitchen and he was doing that!!! TOO FUNNY

Check out our new buttons

2010-08-17T16:33:00.000-07:00

A very dear friend of mine, Mrs. Amanda Yokum, just updated the praying for James Thomas and Luke buttons. What a special treat for us. I can't believe how much these boys have grown. It is amazing to watch them learn and try new things every day. Thank you Amanda for doing this. It means so much!

James and I really appreciate all the prayers. God is hearing the cry of His people and watching over us. James Thomas is on week 4 of his steroid trial and has shown a response thus far. 80% of DBA kids show a response initially, so now we get to the tricky part. Over the next few months we will lower James Thomas' dose. We need his body to still respond until we get to a long term, healthy dose. About 40% of DBA kids are able to do this. Please pray that James Thomas is in that group!!!!!

We are right in the middle of the IVF stuff. I am starting to get really anxious about there being a strong embryo that is an HLA match. All I can do is turn it over to God but boy am I nervous!!! Prayers in this area of our life would be greatly appreciated too.

Again, I know we wouldn't be in the place we are today if it weren't for all our faithful family, friends, and friends of friends covering us with prayer. Thank you!

Pictures, pictures, and more pictures!

2010-08-11T18:08:00.000-07:00

We have been doing a lot of traveling around the Garrett household but now we are back in Houston for a little while. I have wanted to post some of these pics for a long time.
Nancy had a great idea when James Thomas was born. She said that every year I should take a picture of James Thomas in one of James' work shirts. It would be really cute to watch him grow into it as he becomes a young man. Well, we have our birth and age 1 shots!

James Thomas has been obsessed with the outdoors lately. I can't wait for Fall to get here when everything cools down. He got a sand and water table for his birthday from Mimi and Papaw, and loves playing in it. Swinging is another one of his favorites right now and once he gets in, you can't get him out. We have had a lot of fun lately!

Cliff and Sarah got married this past weekend at Palmetto Bluff in South Carolina. Palmetto Bluff is a little peace of heaven on Earth. They had a beautiful southern wedding surrounded by their closest friends and family. It was perfect! We are so happy they moved back to Houston!!!! Congratulations Cliff and Sarah!

This is the chapel they got married in!!

While in South Carolina we had the best little get away. We got to ride bikes, James saw dolphins while kayaking, we went to Hilton Head one morning, and enjoyed relaxing as a family. It was a much needed vacation for me!!!!

We are on week 3 of our steroid trial. I am very hopeful and optimistic that James Thomas will show a response. He is handling the steroids very well and the side effects have been minimal. That alone is answered prayer. If you think about us when praying, please continue to lift up James Thomas' trial to the Lord. We know that the steroids can work for us!

Back in town

2010-07-21T17:52:00.001-07:00

Camp Sunshine was AMAZING! We were so blessed to get to spend the week with other DBA families in the beautiful state of Maine. We learned more about DBA than we ever thought possible and FEAR is no longer the word I would use to describe this journey. We start our steroid trial Friday and we are praying for success. Steroids can be a very good road for these kids. I am ready to get started. Here are just a few of the many many pictures we took last week.

After Maine we moved on to the state of Kentucky for a wonderful 90th birthday party for Grandpa. Almost all of James' family was there to celebrate the life of Grandpa Tassie. You could see the love for this amazing man and I am so glad we made it. We also got to see Grandma and Pawpaw which is always a good time. This was James Thomas' first time to Kentucky and he was great. I am so proud of our little guy because he traveled perfectly.

While in Kentucky we got to see the Hutcheson family. This was a special treat. I have prayed for Kashiku and Lemlem, seen pictures of them, heard numerous stories but to meet them in person was priceless. We had an awesome lunch and the kids played with James Thomas. I have known Karen a long time and to sit with her and John Mark and watch our kids play was awesome. I wish they lived closer. Here are some pictures from our great lunch!!!

Caring Bridge Page

2010-07-02T18:28:00.000-07:00

I decided to set up a Caring Bridge Page for James Thomas. Lots of other DBA families have them and they are awesome when it comes to following all these kids through their medical journey. For the past 8 months we have really been in what I call the Honeymoon phase of DBA. We go in for our bimonthly transfusions, meet with our Hematologist, and monitor James Thomas closely for fever. I have gotten very accustomed to clinic, the ER, and all the staff at Texas Children's. Our hematologist feels that James Thomas is needing transfusions too frequently and so she is moving up our steroid trial. We originally wanted to wait until he was 18 months old but that is not going to be the case now. We wanted to wait until we got back from most of our travels. We leave on Friday for our dear friend Richard Duge's wedding in Austin, from Austin we fly to Maine for Camp Sunshine, then we go to Louisville for Grandpa's 90th birthday (and we are going to get to see the Hutcheson family WOO HOO), and then back to Austin. So our big date is July 23rd! I am super nervous about this entire process. We want James Thomas to respond with minimal side effects. It is also time to start our IVF stuff too. We had the most amazing consult with Dr. Hughes and he said everything is ready in Detroit. With all this said it was time for Caring Bridge! I am still going to update this blog. It will be more of what is going on with our day to day life. It will be my place to post fun pics and record all the great things James Thomas is doing each week!

Thank you for following us through out this journey. Your prayers have been heard and we are doing so well. If you think about us in the next week or two say a little prayer for all our travel. I do not LOVE to fly and we will be doing lots of it with a 13 month old!

www.caringbridge.org/visit/jamesthomasgarrett

First toothbrush, Father's Day, Lake and more!

2010-06-21T16:13:00.000-07:00

James Thomas got his first toothbrush at the beginning of the month and he has LOVED using it. Anytime he sees James or me brushing our teeth he whines until we give him his. He will walk around forever holding that brush and playing with it. It is so cute! Hopefully this great oral hygiene lasts.

My mom came down last week and went with us to clinic. She has never been to clinic and never met Dr. B. I am glad my mom got to go so she can picture where we spend so much time. It is nice to have the company when you sit and wait for hours on end. My mom LOVED Dr. B which is very reassuring. We are so thankful we switched doctors back in December. We had back to clinic Thursday for a transfusion. We also set a date for our steroid trial. We will begin in late July once we return from Camp Sunshine. I am so so so nervous about the entire process. Please keep us in your prayers as we begin this coarse of treatment.

Happy belated Father's Day to all the wonderful dads out there. James, you are amazing and I couldn't raise James Thomas without you! He is truly blessed to have you as his father! I love my dad more than I can express on this blog and James' dad and Jim have taken me in like their own daughter. I am truly blessed and surrounded by fantastic men.

We had a wonderful time celebrating at Lake Limestone this weekend. We should make that a tradition!

Here are some fun pics of JT with his toothbrush and at the lake!

PS I got some new curtains for our kitchen. I will post those too!

Waiting for some birthday cake!

Enjoying some yummy birthday cake with Grandma and Pawpaw

He turned 1!

2010-06-10T08:18:00.000-07:00

This is a very over due post but finally I am getting it up. We had a wonderful weekend in Galveston celebrating James Thomas' 1st birthday. On Saturday James Thomas was surrounded by some of our family and friends as we all enjoyed a beautiful day in the sun. The beach house was perfect, James cooked some great food, and I had a fun time decorating and adding the finishing touches to his special day. We couldn't of asked for more. After the party we got to spend the rest of the weekend enjoying the beach. James Thomas is a water baby. He loves it!

Even with James Thomas' diagnosis of DBA, this year has been the best year of our life. James and I have grown more than we could of ever imagined. We have learned the true meaning of LOVE and FEAR. We have a whole new perspective on life. I know I am a better person than I was a year ago and I owe it all to God for giving me my precious son! I can't wait to see what this new year will hold for us. I know it will be difficult at times as we start our steroid trial and IVF to conceive our next child. We have faith in God's perfect plan and he hasn't disappointed yet. Thank you for sharing this past year with us. It wouldn't of been the same with out you.

Happy Birthday James Thomas. You are everything we dreamed of and more! I am so proud to be your mom and can't wait to watch you grow this next year. May all your dreams come true! You are my HERO!

PS We have so many pictures it would take years to upload them all. These are just a few and hopefully I can upload more later.

What we've been up to......LOTS OF SWIMMING!

2010-05-27T18:46:00.000-07:00

We have done a lot of swimming lately. We have gone swimming at friend's houses, swimming at Grandma & Pawpaw's house, and today we went swimming at the Noah's Ark pool! The kids had so much fun playing today. I think they all took record long naps! We have had so much fun! Here are lots of pics from the past two weeks. James Thomas got another blood transfusion last Monday, he is LOVING drinking out of a big boy cup, he had a melt down on our five hour drive to Nach so we had many stops so he could stretch his legs, and lots more! Hope you enjoy the pictures!

James Thomas will be 1 next Friday. We are very excited to celebrate in Galveston with lots of family and friends! I can't believe my baby is almost 1! Where does the time go?

Where has the time gone?

2010-05-19T13:19:00.001-07:00

This is a picture of the prayer quilt Austin Heights Baptist Church made for JT.

Hands Free....I am walking!

This is Dr. Bertuch (our hematologist). We LOVE her!

My sweet boy and me on Mother's Day!

Family picture on Mother's Day before church.

Last pictures of JT in his duck tub. He uses the big tub now! He is so grown up.

It has been so long since I have posted. We have been staying busy with play dates, parties, and more. I have more pictures I need to upload off my camera. We spent Mother's Day in Austin and had a wonderful time. Sarah cooked us a great brunch and we got to visit all together. James Thomas got his 15th blood transfusion on Tuesday. He was amazing and all the nurses love him. Our nurse this week told everyone that James Thomas was her boyfriend. It was really cute! We joined Gymboree and have been two weeks in a row now. He LOVES it. I have been waiting until he was more mobile and I can tell he really gets a lot out of the classes. Most exciting news is......we have a walker. He is walking and doing a fabulous job. He still uses his knees as his primary mode of transportation but any chance he gets he is on those feet. I am so proud of him!
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Great weekend

2010-05-03T14:15:00.001-07:00

We just got off another great weekend! We started it off with an unexpected blood transfusion. James Thomas was scheduled to get blood tomorrow but I had been noticing that he was getting pale again. He was also sleeping a lot. Every day last week he took several long naps. In fact one day he had two naps by noon. Well, Friday morning he had a low fever so I called and they told us to come on in. Moms most always know because sure enough, his hemoglobin was 7.6. We try not to ever let him drop below 8.o and we transfuse once he gets to 8.5 so I am very glad we went in. Daddy was able to join us later that afternoon and provide some entertainment. It is getting harder to get through the transfusions but we made it through #14!

Nancy came into town on Saturday to watch James Thomas for us. I feel bad because we hardly saw her at all. James and I were very busy but we appreciated her help. James Thomas has a lot of fun playing with his Grandma! I was able to see a lot of old friends from Baylor this weekend. I went to Sarah's baby shower and to Elizabeth's wedding shower! I am very excited for both of them, CONGRATULATIONS! On Sunday I got to go to Sunday School and Church! It is hard to do both because James Thomas usually has a melt down in the nursery. So, yesterday was awesome! Our Sunday School class had a baby sprinkle for Denise and Eric as they prepare to welcome Hunter! James and I also went over to the Gips house Sunday afternoon. They had James Gips in late March and I had not met him yet. He is absolutely adorable and we are very happy for our great friends. At the Gips house we got to visit with some of our besties from law school. Now that they have graduated and are working we don't see them as much as we use to. It was great to catch up!

The get togethers haven't let up! This morning Melissa and I met Ashleigh for lunch at the park. It was great to catch up and take pictures of the boys. Gage is a cutie and the this summer when they come back, the boys might be old enough to actually play a little bit! Tomorrow James Thomas and I are having lunch with more friends. We are staying busy!

Everything else here is good. We don't go back to clinic until next Tuesday!

Histeroscopy and follicles

2010-04-27T15:48:00.000-07:00

Today was my first procedure on the PGD journey and it went great. I have had blood drawn twice but never anything else. Dr. H was fabulous and it was not a big deal at all. We got really good news! Dr. H said my uterus looked good but that my ovaries were fabulous! I had 26 follicles. He said anything above 20 is awesome. We are really excited because these follicles are what can turn into eggs which could become embryos. We assume James and I do not have any fertility problems but this is an area that could cause a problem for the PGD even if you don't have fertility problems. The more embryos we have, the more HLA matches for James Thomas! I feel like we are learning so much every day.

We now have to wait for our probe to be made by Genesis. We talked to our genetic counselor today and they have everyone's DNA sample but still need our consult with Dr. Hughes which is not scheduled yet. Everything seems to be going smoothly so far. We are thankful and don't take one little success for granted.

Melissa was going to watch James Thomas today but Luke has been very sick. We hope he feels better soon. Mandi and Avery stepped in and watched him while I was gone. James Thomas had a blast and I feel blessed to have such great friends when we don't have family in town. We left Mandi's house with a new toy. James Thomas is walking around the whole house. Thanks Mandi! James Thomas also tried spaghetti for the first time today. He LOVES it and got it everywhere! It is a blast watching him try new things.

Good luck to all my teacher friends and mom who are going through TAKS this week! I know your kids will do great. I can't lie, I don't miss the stress of TAKS.

Love,

A bunch of posts rolled into one!

2010-04-26T17:40:00.000-07:00

Things are going well around the Garrett household. I have been meaning to post these pics as three different entries but somehow the time just slips away and I never get around to doing it.

Ever since James Thomas starting eating regular food he REFUSES to take food off of a spoon. I have been very frustrated with eating time. I worry that he is not eating enough and not eating good foods. So, the other day I thought we would try Velvetta Shells and Cheese. We have a winner! He LOVED it. So I stirred in strawberries and carrots and he ate the whole thing up!

James Thomas is also very curious these days. He is constantly in something or crawling around looking for who knows what! The other day I happened to have my camera when he started pulling out the toys from the toy chest. This boy is determined to get those toys!

We had a wonderful weekend at the lake. We have never taken our Houston, Baylor friends (plus the Chambers) to the lake. We had a blast. Little Luke was sick but he was still able to give us a few smiles. We missed the Coles but we were thinking about them as they participated in the March of Dimes walk. Kim (Julie's sister) gave birth to twins at 25 weeks. They are currently at Texas Children's growing bigger every day.

Hope you enjoy all the pictures. James Thomas is so much fun and a joy to be around. He is an amazing, little guy!

Transfusion #13

2010-04-20T16:13:00.000-07:00

Last week was transfusion #13 and it was very special. James Thomas' grandma and pawpaw had come down for the weekend so they decided to stay until Monday and go with us to Texas Children's. Pawpaw had never been to clinic and he got to see exactly what a transfusion day is like. It was awesome to have the help and someone to talk to the entire time. Monday is a great day for transfusions because there was lots of live entertainment. Here are some pictures from that day.

Grandma brought Daddy's piano from when he was a baby and James Thomas is in LOVE! He may have a music career in his future. More pics of him banging on his new toy! Mimi and Papaw came this past weekend to watch James Thomas and Luke while we had a garage sale at the Jones' (which was very successful). They got lots of performances from James Thomas too. Hopefully, I can upload a flip video of it soon too.

The next step along this journey

2010-04-18T18:01:00.000-07:00

Ever since I first heard about having another baby with the same HLA as James Thomas so he could receive a bone marrow transplant, HOPE filled my heart. While a bone marrow transplant is the last thing I want for James Thomas the possibility of it can only happen if he has a sibling who is a perfect match to be his donor. As you all know James Thomas is our only child so we have to use modern medicine to guarantee this for him. I originally said that I wasn't going to share this part of our journey on our blog due to the uncertainty of everyone's reactions. But after reading "Saving Henry" and "The Match" I believe being open is the best way to go for James and me. There is no way I will be able to explain everything or do a good job at it but I will try to do my best to share our story with you. My hope is that in the rare chance you find yourself in the same situation or meet someone who has to go down this path then maybe I can be there for them. I am so thankful for the people who have traveled this road before me and are open about it. It makes the process bearable.

So how do we ensure that we have an exact HLA match for James Thomas? Along with MANY prayers we will use IVF with PGD. James and I first heard about having another baby back in October when we first learned that James Thomas had Diamond Blackfan Anemia. A family friend of James' is a doctor in Washington DC and she suggested that we try to get pregnant right away. Then in November, I traveled to New York to meet with the experts in DBA and they told us about IVF with PGD. Basically, you go through the same IVF process that family's who have trouble conceiving go through. When the embryos reach day three of development a cell is removed from each and sent to Genesis Institute in Detroit where they will test them. Then they will implant the embryo or embryos that match James Thomas' HLA. The reason we have chosen not to try naturally is because there is only a 25% chance of a sibling being a perfect HLA match. They will also check each embryo for the genetic mutation that James Thomas has. Based on James and my genetic testing they don't anticipate any of the embryos having the DBA mutation but we are at a higher risk of this happening since we have already had one baby with this mutation. My initial fear was what do we do with the other embryos? It would be devastating to destroy the embryos that have the RSP 19 mutation. What if we have a lot of embryos, do we freeze them all and implant them later? Can James and I really have 6 or 7 children or on the other side could we destroy the embryos that are not HLA matches? This is the side of PGD that is very difficult. This is where I pray that you never have to even think about these kinds of things. But, from all the research I have done we would be blessed to have that many embryos because families try over and over again and some are never able to conceive a child and the ones that do feel blessed beyond words when it finally happens. One mom told me I would be lucky to have extra embryos because she never did. In fact it took her over a year of attempting to finally have her daughter (which she gave birth to a few months ago!!!). So, I do not worry anymore about that problem. I trust that God will be all over this and what happens will happen. I just pray that it won't take James and I several attempts to get our precious baby.

We have found our fertility doctor who is going to walk us through all of this. I was nervous about him at first, mainly because I have never had a man doctor and I wasn't sure he would be as overly compassionate and cheerleader type which I know I need. But after two consults and being assigned a nurse I know he is where we need to be. We are using Dr. Hughes with Genesis Institute to conduct the PGD. There are only two places in the US that do this and he was the pioneer behind PGD. Tomorrow we will be receiving our DNA swabs. All three of us, plus our parents have to send in swabs with our DNA to Genesis, then they will use them to make a probe to test the embryos. The probe must recognize James Thomas' HLA in all the embryos. Once the probe is made, then we will be able to begin the IVF process. Dr. H wants to do blood work and some other prepping tests while the prob is being made. Hopefully, we will be able to begin those this week. It is a lot to process and learn but we are so thankful that medicine is able to help us grow our family and at the same time do everything possible to ensure that James Thomas lives a long, healthy life. The author of Saving Henry was asked what she says to people when they ask her, "How could you do all of this?" She said when she looked Henry she sad to herself, "How could you not?" That is our philosphy here: How could we not do everything we can to cure James Thomas no matter what the financial or physical pain it causes us.

We ask for your prayers through out all of this. As much as I do believe in medicine I know that God is in control. He has a PLAN for our family and we want Him to be all over this entire process. I always try to find a song that really hits home with what we are going through. So, this is my song for IVF with PGD. Hold Us Together by Matt Maher I will try to figure out hot to attach a link to hear the song. Hope this worked.

http://www.youtube.com/watch?v=-he2DohfwWE

Picture Time

2010-04-08T14:06:00.000-07:00

We have had the best two weeks with no doctors appointments! We have been to the zoo twice, have had some work done on our house, had lots of play time, and a wonderful Easter! On Easter Sunday James Thomas turned 10 months old. I don't know where the time has gone. These past ten months have been the best ten months of my life. I can't believe I am already starting to plan his birthday! We have decided to celebrate in Galveston and James and I rented a house right on the beach. We are really excited!!

James Thomas is on the go and super mobile. I think any week he will be trying to take his first steps. He is eating real food, clapping his hands, and taking in the world. It is really fun around our house right now.

Next week we are back to the doctors as we have three appointments scheduled starting with a transfusion on Monday. Beware, I am about to post lots of pics!!! Hope everyone is enjoying Spring and the perfect weather!

First trip to the zoo
Fun in the laundry basket

My Easter basket.
What did the Easter bunny bring?
SLINKY!!!!!
The Easter basket Mrs. Ashley gave me

He has Risen!!!
Time to cover those plugs!
Our pretty flowers have bloomed!

Great weekend

2010-03-29T19:03:00.000-07:00

We have been super busy around here. On Monday I took James Thomas to the zoo for the first time. It was actually my first time to the Houston zoo as well. We had a wonderful time with the Jones' and Chambers kids. I bought the zoo pass and can't wait to go back this Wednesday. Last Wednesday James Thomas got his 12th blood transfusion. He is really on the go now so this was my first time to chase him around the room with his pole. He has no idea that he is connected to the IV in his chest and my biggest fear is that he will take off and the needle will be pulled from his port. That would be a nightmare so I must keep my eye on the little guy every second. Luckily he took a good hour nap in his stroller which gave me a little break. Transfusion days are so long. I think Texas Children's does it a little differently than other hospitals because we go in for labs, wait for the blood, and get the transfusion all in one day. This last time we got there at 9:30 and left around 5:00 which is one LONG, LONG, day. He is feeling great now and has LOTS of color. I love it!
James and I are having a lot of work done on our house so Thursday morning the contractor and painters showed up bright and early. We are living out of two bedrooms and have spent a few nights at the Jones' house as well. It looks awesome over here (amazing what fresh paint can do) but I am ready for them to finish so I can put my house back together.
We had a great weekend cheering on the Baylor Bears in the Sweet 16 and Elite 8 with friends. The Heersinks drove into town to watch the games and it was nice to get to spend some quality time with them. We had so much fun going to the games on Friday and Sunday. James and I love Baylor so much! We have such awesome memories from our college days and formed the best relationships while there. I think choosing Baylor for college may be the best decision I ever made. That one decision paved the way to the wonderful husband, baby, and friends I now have. It would have been fabulous if Baylor could of made it to the Final 4 but we are still proud. Tonight the girls got into the Final 4 in San Antonio so James and I may have to find a way to get down there for those games. GO LADY BEARS GO!
This week is very uneventful medically which is a blessing! We are waiting for some genetic test results from the doctors in New York. They drew all our blood back in November so we really hope we hear back soon. This would be our prayer request now. We are at a stand still until we here back from them. We always pray that James Thomas will start making red blood cells on his own and complete healing!

Spring Break

2010-03-19T08:51:00.000-07:00

I just wanted to update to let you know where we are after our adventure Sunday and Monday. James Thomas is doing GREAT! They still think he had an asthma attack but won't diagnose him as asthmatic with just one attack. We are praying that was a one time incident but we now have an inhaler for him in case it happens again. We went to the pediatrician on Wednesday and got the all clear! They have moved his next transfusion up a week so once again he is only going two weeks between transfusions. I really really wish he could go longer, maybe next time.

My mom took James Thomas to Johnson City for a few days. My dad was dieing to see him and I needed to get some work done around the house. James and I are having the house painted so I need to pack up all our stuff and put it away. This would be impossible with a little guy crawling around and pulling up on everything so I am glad my mom offered to take him for a little bit. I think I may take a break and go get a massage!!!! This is the first time I have been in our house without him. It is really strange and quiet around here. I already miss him so much and I can't wait to go get him tomorrow!!!

I am feeling really rested and rejuvenated! We are doing great and loving this beautiful weather here in Houston. I wish it could stay like this year round. I hope you are all enjoying your spring break and getting ready for a great weekend!
Lots of love!

Not quite what I expected

2010-03-15T07:09:00.000-07:00

Thank goodness it is morning because last night did not go as I thought it would. First of all we were not placed on the 9th floor but in the Abercrombie building at TCH. The Abercrombie building is the old buildng and the rooms are not the same. It is hard to know more about your child's illness than the doctors or nurses. I feel like I am the one making sure he is doing o.k. For example, late last night is hemaglobin was at 9.9 and first thing this morning it had dropped to 9.2. They thought he was great but at this rate tomorrow he would be 8.5 and Wendesday he would need blood again! When I explained this to the doctor she says, "Maybe I should call somebody in that department and ask them what they think?" I don't understand why they didn't put us on the hematology/oncology floor but I have to let that go. I am not the one in charge. James Thomas did not sleep last night. He cried and cried until about 2:45 and then they came in every 30 min. to do who knows what, which woke him up every time. Then at 6:50 the lab tech came in to draw blood and he has been up ever since! I think tired is an understatement.

I know this post sounds negative and I am trying to stay positive and be thankful for all the good things (not being on oxygen anymore, JT's eating is GREAT, and the fact that he is alive) but lately I feel this poor kid just can't get ahead. We are doing well and James just brought us breakfast. My mom is on her way into town. We are going to be discharged sometime today (the nurse warned it may be awhile) and my mom is going to let me get some sleep. I am sure she will enjoy her one on one time with James Thomas as well.

That is where we are today. Thank you for all the support and prayers.

Back at TCH

2010-03-14T20:54:00.000-07:00

I can't believe I am actually writing these words but we are being admitted tonight! James Thomas starting having a mild cough on Thursday and by today he was wheezing terribly. After much debate, James and I decided to bring him to the ER and thank goodness we did. When we first got here they told us his wheezing was an 8-9 on a 10 point scale. They even warned us that he might have to go to the NICU. The immediately put him on breathing treatments and gave him some steroids. He responded beautifully so they told us they would watch him for 3 hours and if he remained stable we could go home. This was wonderful news!! Well, his oxygen levels starting dropping so they had to put him on oxygen. When they tried to take him off it later in the evening his levels dropped again. That is when they decided to keep us over night to watch the little guy. My heart just aches for him. He can't seem to get a break. The last doctor that came in is afraid he may have asthma. They told us that they will have to wait and see as he gets a little bit older. We are waiting for our room back on the 9th floor. I will say it is nice to know where we are headed and we will know some of the nurses. There is a comfort about familiarity. Please pray he does well tonight and we get to go home in the morning!

We are doing well. James is going to get us settled in our room and then head to the house.

sick sick sick

2010-03-07T18:59:00.000-08:00

Please say a little prayer for James Thomas. He can't seem to get over this stomach bug. His stomach has been upset since Tuesday and it just makes me so nervous because we really don't want him to get dehydrated. He is also low on blood. We go on Wednesday to meet with Dr. B and to get a transfusion but when you are severely anemic, Wednesday seems like a world away. He is pale, cranky, doesn't eat well, and can't get a good rest. I worry a lot about his counts.

We are wrapping up a great weekend. James turned 29 on Saturday! Happy Birthday James. We got to go out with some friends last night and we celebrated with Nancy and Jim as well. I am so thankful for James and LOVE LOVE LOVE him so much!

Last weekend James Thomas got his first bible at church. It was a very special moment and we were excited to have some family in town to participate . Below are some pictures from that great day!

Go Texan Day

2010-02-27T12:56:00.001-08:00

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

2010-02-24T16:21:00.000-08:00

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

2010-02-17T08:43:00.000-08:00

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

2010-02-10T11:14:00.000-08:00

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

2010-02-09T08:39:00.001-08:00

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

2010-02-07T14:38:00.000-08:00

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

2010-02-04T13:02:00.001-08:00

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!!!!!

He scores a 10!

2010-01-26T15:04:00.000-08:00

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

2010-01-22T13:54:00.000-08:00

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

2010-01-13T19:37:00.000-08:00

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

2010-01-08T13:03:00.000-08:00

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

2010-01-07T15:47:00.000-08:00

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

2010-01-06T14:54:00.000-08:00

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

2010-01-04T18:57:00.000-08:00

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

Check out this great video!

2009-12-28T19:38:00.000-08:00

Check out this cool video I found it on a blog of another little girl with Diamond Blackfan Anemia. It is well done and I have to be honest and say it really opened my eyes. Sometimes I forget without James Thomas' transfusions he would be dead. Thank you again to all our donors, we are eternally greatful. I think I will be donating blood sometime before the New Year. If you feel called to donate I encourage you to do so but please do not specify James Thomas when you donate. We have four donors for James Thomas right now and it is not good for his little body to be exposed to lots of different blood. James Thomas' body is getting used to these people's blood so it is very important no other blood gets thrown in the mix. However, there are LOTS of children just like James Thomas that do need your blood! Think about saving a life in 2010!

http://www.youtube.com/watch?v=yYJEK6bv8Ys

home for the holidays

2009-12-24T07:44:00.000-08:00

Sorry for the delay in post. It has been super busy getting ready for Christmas. We got home Saturday afternoon and my parents stayed until Sunday. The past few days James Thomas and I have been shopping shopping shopping. We are on our way to spend the weekend with James' family. It is wonderful to spend Christmas with family. We are truly greatful for all the love and support. This is a very special Christmas with our precious son! Enjoy your holiday and we will update more in a few days.

Just a little update

2009-12-17T14:25:00.000-08:00

I am sure many of you are wondering what in the world we are still doing at the hospital, so here is a little update. James Thomas' bacterial infection came back as MRSA. This is a bad type of infection to have and is difficult to treat. They have pulled his pic line and replaced it with an IV. This was not a pleasant experience because they blew two veins before they got the new IV in. My poor little baby was screaming and crying. Luckily, I was not here so the wonderful nurses got to tackle that ordeal. The best thing about babies is that they don't remember. James Thomas was playing and smiling within 10 minutes of the procedure.

We are staying here to get antibiotics until Saturday. They will also check his counts Saturday morning to see if he needs a transfusion before we head home. The plan is to wait until after January 1 to put in a port. This will be an outpatient surgery and will go in his chest. They say it has a less likely hood of getting infected and he will be able to bathe with it in. This will make bath time so much more fun at our house!!!! They will give us more details later. Please pray his counts stay good because if they have to transfuse before surgery he will have to get another IV and they are so hard to do with his little veins.

Today Santa came to see James Thomas. He was sleeping so Nancy was able to capture the awesome picture below. This picture is priceless as we will always be able to use it during this special time of year. How fun for him to think Santa was standing over him as a baby. Great job Nancy on capturing the picture.

Two players from the Houston Dynamos also stopped by. The Houston Dynamos are the professional soccer team in town. They absolutely LOVED James Thomas and took pictures with him on their own cameras. SO CUTE! Stuart Holden is one of the players who came by. He spends a lot of time up at Texas Children's visiting the kids. He has been nominated for the Jefferson Award so if you have a free minute go to this website and vote for him!! He is the player dressed as an elf below! http://houston.mlsnet.com/t200/community/awards/

We were supposed to celebrate Christmas this weekend with my family because this is our year with James' side. However, we are up here instead so my mom and dad are on their way to Houston to spend the weekend with us. I am excited to see them. Nancy was a huge help when she was here so they have big shoes to fill!!!!

That is all for now. Our spirits are still good and we have lots to be happy and thankful for. Thank you for all the emails, texts, and notes of encouragement. The chaplain came in yesterday and asked me how do I handle all of this so well? I told her we have the most amazing support group. It is the love from all of you that keep us so positive!

Love,

Christmas came early in room 926!!!!!

2009-12-15T19:43:00.000-08:00

This is going to be a quick post but I will write details tomorrow. Melissa is here and we are having a slumber party but before we turn in for the night I wanted to get our pictures up and a quick video. Today was filled with lots of gifts and visitors. The Continental Pilots came by and brought James Thomas a cute bear, then some sweet moms from another organization (I can't remember the name right now) gave him the cutest knit hat and they let me make a list of things from Walmart that we could use. They go to Walmart and shop for us and bring me the necessities on Friday. We are allowed to spend $25. Sweetest thing ever!!!! Then, yes then, the ultimate Christmas gift ever.......Craig Biggio delivered a Build a Bear to precious James Thomas. This is the sweetest story ever (I will write about it tomorrow). I was so excited, I just couldn't handle myself. I have LOVED LOVED LOVED Craig Biggio since I was a little girl. These pictures are priceless to me! It was so special. Mrs. Ashley Grimmer stopped by this evening with some wonderful goodies and the night ends with Melissa sleeping on our pull out bed in the room with James Thomas and me! What a special day!!!!!!

Looks like we could be here longer but I will know more tomorrow. I am just taking it an hour at a time but today was good!
Off to bed!
Love,
Lindsay

Another day at TCH

2009-12-14T10:45:00.000-08:00

Good afternoon from all of us at TCH! We wanted to update everyone and you know how we are doing.

Things are going well and the blood from James Thomas' pic line is not growing anymore bacteria. This is the plan: we have to wait until we have three consecutive days of no bacteria before we can go home. Today is day 1. We are also waiting for the bacteria from Saturday to grow so we know what kind of infection he has. Right now they are giving him heavy duty antibiotics that kill most of the common infections, but once we know the exact type they will switch us to a more specific antibiotic. They said we should be able to administer this one from home. I know we will be here until Wednesday but hope we will be home by Thursday!!!!

They are also monitoring his RSV virus. He has a pretty bad cough that comes and goes and he is fighting a viral rash on his little body. They said the virus has to get worse before it gets better but he seems to be handling everything o.k. I am glad that we are here for them to keep an eye on it all.

Nancy is still here and stayed the night with me yesterday. We actually got some decent sleep which is suprisingly wonderful! She is a wonderful help! Melissa came by this morning and we went and had lunch at Chick -fil-A on the third floor. I always loving see any member of the Jones family. Some people from Walmart stopped by and brought James Thomas a stuffed dog. They are delivering Christmas gifts for all the kids which is so sweet.

It is such a small world in the hematology/oncology family at TCH. Our bestie Caroline is here right now with an infection as well, another sweet girl I met one day at clinic is also here getting chemo, and a few other families I have met on this journey. It is great to see familiar faces but also sad to see all these kids fighting off these horrible conditions. I ask you keep all of them in your prayers as well.

Speaking of prayers: I have a great praise report! We have officially switched doctors and I LOVE LOVE LOVE our new one. We had a meeting with her last Wednesday and she spent an entire hour talking with James, my dad, and I. I feel like she was able to really see who James and I are and what we need from her. She was totally open to everything we had to say and I know we are going to be a great match. On Saturday in the ER one of my sorority sisters, Hillary Skelton was on call. She is a second year resident up here. She asked who our hematologist was and when I told her we just switched to Dr. Betusch, she was so excited. She said Dr. Betusch was her favorite when she was working on the 9th floor. She even emailed Dr. Betusch and told her she knew James and I. It is such a small world and I know God has his hands over all of this. I have learned that even when things don't work out exactly how you think, DON'T GIVE UP! Since October we have had two home health nurses and now two hematologists and I the ones we have now are FANTASTIC! It is truly a blessing and I am so glad we weren't content with what was assigned to us. It is such a great feeling to completely trust your health care team. I LOVE IT!

I am going to try and post a picture of Elizabeth and Julie from Sunday. I was so disappointed that I didn't get to run with them but when I saw the picture of them in their DBA shirts I was filled with joy. It makes me smile just thinking about them running with everyone reading Knock Out Diamond Blackfan Anemia!!!! Thank you for representing us in the White Rock 1/2 Marathon!

Hope you are having a great day!
PS I can't upload the picture right now but I will try again later.

What are the odds.......?

2009-12-12T17:12:00.000-08:00

Please don't use this phrase with me ever again! I am kidding of course but here we are at Texas Children's on the 9th floor again with crazy odds. Let me explain......

James Thomas went in to his pediatrician Thursday for his six month check up and shots. He received all his immunizations, the flu, and H1N1 shot. I was expecting a cranky baby and slight fever so when we got home I gave him a little tylenol. At 1:30 he woke up screaming and had 104.8 fever. I called our pediatrician and he said, "104 is high for shots but what are the odds he would catch a virus or infection the exact same day he got shots!" He told me to give him motrin and if he didn't calm down go to the ER. Well, 45 minutes later he was asleep again so we decided to ride it out until morning. The next morning his fever stayed around 100 with the motrin so I thought it was just a reaction to all the shots. I didn't give him another dose around 4:00 on Friday and by 4:30 he was going crazy. His fever returned and got up to 102.6. I called the hematologist on call this time and she told us to come to the ER. James and I went to the ER last night and they ran some tests and said he probably has bad luck and has a virus too. They sent us home around 1:15 a.m. (Stay with me the story gets better!) At 8:30 this morning Texas Children's called us and told us to return to the ER because we were going to be admitted to fight off a bacteria infection in his pic line! My poor baby got shots, a virus, and an infection in his pic line all in the same day!!!!! They have started him on antibiotics and waiting for his culture to grow. Right now they are exactly sure what kind of bacteria is growing. We are settled in our room and enjoying this adventure! We have learned to be flexible and go with the flow. James and I were supposed to run the White Rock Half Marathon tomorrow with Julie, Elizabeth, and Will. I ordered us "Knock Out Diamond Blackfan Anemia" t-shirts to wear in the race! I am so sad because I have LOVED running with Julie the past two months training for tomorrow. A little shout out to our runners, "GOOD LUCK FRIENDS! We will be praying hard for you tomorrow during your run. We wish we were there to run with you!!!" We will wear our t-shirts in the hospital tomorrow in spirit! I will try and get a picture to post.

That is all for now. I will post more later. We are all in good spirits. Nancy is with us and a great help! We pray for good test results and a quick trip. We want to be home asap!

Lots of love,

BIG APPOINTMENT

2009-12-08T19:58:00.000-08:00

Quick prayer request before bed. Tomorrow at 3:00 I have an appointment with our social worker and another doctor at TCH. James and I are concerned about James Thomas' care right now and course of treatments for the future. We are meeting to discuss these concerns. As of now James is not going to be able to come so my dad is coming into town. We really appreciate my dad driving in for the day but I really hope James can make it too. I absolutely hate confrontation but I know we have to do this. Our only other option is to drive to Dallas for treatment at the Diamond Blackfan Resource Center. This would be very difficult for me so hopefully we can work everything out tomorrow. Please pray for open minds and caring hearts tomorrow. I also ask for peace for James and I. It is really scary when you doubt your doctor and treatment. I hate that feeling. We do know with Go all things are possible. I was reminded of that tonight when I received these words on a beautiful James Avery charm.

Besides that we are all doing well. We met with a genetisist on Monday, tomorrow we have labs and this appointment, and Thursday James Thomas gets his 6 month vaccines. Sometimes I feel like we live at the doctor. He is having a great week. Getting the blood transfusion last week really helped. It is amazing to see the difference.

Thank you for all your love and support. I have a list of emails I am responding to so please don't think I am ignoring you if I haven't gotten back to you yet. I will get back to everyone, I promise.

5 years....

2009-12-04T09:21:00.000-08:00

That is how long I have been married to my amazing husband. I know a lot of people say marriage is hard but I have been blessed because it has been so easy for us and I do not take this for granted! Spending every day with the person who knows you inside and out is a dream come true. There is no one else I can imagine spending my life with. I am so thankful for James. He brings me so much joy! Because we fell in love we were able to bring the most beautiful, little boy into this world. Did we have any idea that we would have a "sick" child 5 years ago? You hear how hard these children can be on a marriage and family. I am not naive and think our new journey is going to be a cake walk but I am so thankful James is the one by my side through it all. We have always trusted in God's plan for our life. I can sleep at night knowing that no matter what is to come James will be there with me to face it. We will walk this journey hand in hand. So, who knows what life will bring the next five years but I do know I will enjoy the adventure! I love you James and thank you for asking me to marry you! I pray you never second guess that decision!

On another note, James Thomas is six months old today! I can't believe our little boy is 6 months. The time has flown by and we thank God for blessing us with such a special boy. What a memorable day for our family. On my five year anniversary and James Thomas' six month birthday we are getting snow!!!! James Thomas' first snow. SPECIAL SPECIAL SPECIAL

So here are some pictures from James and my wedding day, James Thomas' birth, and our little guy in the snow!

Hope you all have a wonderful winter weekend!

Update

2009-12-02T20:46:00.000-08:00

I haven't written on the blog as frequently as I would like but I am actually still awake tonight at 10:45 so I thought I would update before I go to bed.

First of all I need to say another thank you to all my wonderful friends and family out there. You have all

been so amazing with your love and support. Before I went to New York I received the sweetest gift from some of my closest friends to the spa. I am going to get some serious pampering if I can get away from the house for an afternoon. I have gotten prayer blankets, shawls, teddy bears, books, oils, etc. Each one is so special and a reminder of God's love. Last night I got home from the clinic and on my stove was dinner from Melissa and Greg and tonight my doorbell rang and one of my old students was outside with his mom dinner in hand. I am getting emails about blood donors which we still need and humbled and blown away is how I feel. The thank you notes are coming but for now know I am so grateful.

We are having some difficulty at Texas Children's right now and I am very frustrated. We are still disagreeing on treatment and James Thomas' levels. I called them yesterday because James and I knew something was wrong with James Thomas and sure enough is hemoglobin was at 6.9 (it is not supposed to get below 8.0 and remember all of ours is probably 13 something). I am just devastated because I feel like we live in one of the best medical communities and are going to a world renown hospital but for some reason we are not getting excellent care. James Thomas and I have a doctor's appointment every day next week, one with another doctor at Texas Children's to discuss our concern, so pray we get everything resolved. After being at the clinic for 8.5 hours and away from home for almost 10 I was really down yesterday. Every once in a while the reality of having a sick child slaps you in the face. Yesterday was hard, but today was a GREAT day and James Thomas feels so good. We stayed in our pjs until 11:00! Melissa and I loaded the kids up in one car, ran some errands, and had lunch out. It was nice!

James is loving his new job and everything is great there! V&E gave James Thomas a onesie when he was born and I took some pictures of him in it today. He is so proud of his daddy!!!

I hope you are all enjoying this wonderful time of year. I have my house partly decorated and hopefully it will be complete by this weekend. I absolutely love Christmas and everything that goes along with it. This will be the best Christmas yet! I am so excited.

I better close and get some rest. Thank you again for all the love and support and letting me use this blog as therapy. God bless you all!

Thankful this Thanksgiving

2009-11-26T18:00:00.001-08:00

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!!!

NEW YORK CITY

2009-11-24T05:21:00.000-08:00

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. http://rmhlongisland.org/ 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.

B+ blood donors needed

2009-11-13T19:17:00.000-08:00

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 lindsaywgarrett@hotmail.com. 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

2009-11-13T13:36:00.000-08:00

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,

It's official!!!

2009-11-06T05:54:00.001-08:00

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

Happy 5 Months James Thomas

2009-11-04T17:55:00.000-08:00

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,

Halloween weekend and more

2009-11-02T12:19:00.000-08:00

  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!

THE GARRETT FAMILY
I LOVE THIS LITTLE BOY
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!

love,

Happy Birthday Lindsay!

2009-10-30T07:55:00.001-07:00

Happy birthday sweetheart! . . . I am truly blessed to be your husband. Your joyous attitude, caring spirit, and loving demeanor are evident to all persons you encounter. Thank you for your steadfast faith and strength over the past few weeks. I look forward with joy upon the many triumphs and trials God has in store for us.

Happy birthday Lindsay! I love you.

James

Speechless

2009-10-30T06:20:00.000-07:00

If I haven't trusted God's plan for my life in the past I am reminded that he knows exactly what is best for us. I trust Him oh how I trust Him!!!!

Last night I went to dinner with some great friends and Kari Roe gave me a gift. She said not to open it until I got home and that it was from everyone at Bush. I quickly thought that was so sweet but didn't think anything else. Little did I know I was about to be knocked off my feet.

Let me jump to the beginning of this story. I was 23 years old, graduated from Baylor, engaged to James who had a job at Conoco Phillips, and trying to find my first teaching job in Houston. I had always wanted to work with low income, intercity kids. I remember being in Waco on the internet applying to so many school districts and individual schools. I had a few interviews lined up, one with Bush Elementary, but there was this one job fair that was mostly low income schools on the Saturday before the Bush interview. I remember telling James that if they offer me a job on Saturday I am going to take it and cancel my interviews. After hours at this job fair and waiting in line after line I turned to a college friend and said, "Thank goodness I have that Barbara Bush interview this week because no one here is even giving us the time of day." This man behind me said, "Barbara Bush in west Houston? Why are you here? I have tried to get an interview there for years. It is a wonderful school. Don't waste your time here." Well you see for me and my plans Bush was not the perfect school. It wasn't what I wanted to do. Isn't amazing how God doesn't always do what we want! For many people intercity is God's plan for them but God had BIG plans for me at Bush. I was given a job teaching 3rd grade and the rest is history. The people at Bush are amazing, the families there are wonderful too. I can't tell you how many emails and messages I have received from old students' parents. That school is an extended family to me and their love and compassion is amazing. I miss the people there tremendously but I do know God has a new plan for me. I am so thankful for my five years there and the love that has been poured out to me.

So back to the first part of the story. I come home from dinner and start opening my cards. I happen to save the Bush one for last. Inside the card was message after message from all the wonderful people who work up there. The notes of encouragement and love made me speechless. Everyone saying they were praying for James Thomas. AND THEN TO TOP IT OFF........there was a GENEROUS gift card to a spa for me! I am tearing up as I write this now. I can't believe they did this for me! I am so not worthy yet thankful.

If any of you from Bush are reading this, I love each of you so much. I thank God for his plan for my life which included Bush Elementary and trust this new journey will turn out just as well. I am coming up there next week so be on the look out for one cute, little guy and a grateful mom!

What Diamond Blackfan Anemia means for the Garretts

2009-10-29T11:20:00.001-07:00

Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow does not make enough red blood cells that carry oxygen throughout the body. DBA is usually diagnosed during the first year of life. There are about 25-35 new cases of DBA per year in the United States and Canada. DBA affects both boys and girls equally and it occurs in every ethnic group. The anemia was named for the first two doctors who documented cases of the disease.

I know people have asked how we ended up in the hospital or even knew something was wrong. We went to our regular four month check up with the pediatrician. At the very end of the appt. he looked under James Thomas' eyes and thought he was really pale. He told us he wanted to draw blood to check for anemia. We didn't think anything about it and thought worst case meant James Thomas taking iron supplements. Oh how we were wrong. Dr. Pielop called us and told us his hemoglobin was at 3.2 and we needed to go to Texas Children's Hospital. When we got to Texas Children's it had dropped to 3.0. The normal range 9.5-13.5. We are so thankful for Dr. Pielop because we have learned many cases are never diagnosed. Since red blood cells carry oxygen through out the body we believe some of the SIDS cases are actually a blood disorder never diagnosed. James Thomas' levels would have dropped and oxygen wouldn't have gotten to his brain and heart and he would have died one day in his sleep. Our next appointment with the pediatrician isn't until December and he may not of made it that long. It reminds us that we need good pediatricians. If you aren't happy with yours call me and I can fill your ear about how awesome Blue Fish Pediatrics is. Luke uses another pediatrician in this practice and he has been a true blessing for the Jones'. We LOVE BLUE FISH!

To treat patients with DBA there are two common options: corticosteroids and blood transfusions. Corticosteroids is one of the most successful treatments for patients with DBA. There are major side effects that come with using these drugs for a long time. I don't want to list all of them but please continue to pray about this aspect of his condition. Our doctor on Tuesday told us we would start this treatment after his six month immunizations but today James was on the phone with the Clinical Research Coordinator from DBA Registry and they don't start steroids until one year. This disease is so rare and there are no set guidelines for treatment, SCARY. We want to do the very best thing for James Thomas and are realizing we will have to do LOTS of research to make sure he is getting the best care ourselves. So, if he doesn't respond to the corticosteroid treatment he will do blood transfusions every 3-5 weeks. This would lead to a whole new set of side effects and he would only be able to do the transfusions until we get him a sibling match to do a bone marrow transplant. Yes, I know you are thinking, "Wait, you don't have any other kids." This is something else we are learning and working on. We meet with a Geneticist in early December. There is a Leucine trial but we don't qualify for it. You have to be two years old and transfusion dependent. We will pray for success here and maybe in a year and a half James Thomas may be a candidate.

I know this is a lot of information but I thought it would be good to let people know what is going on and what is to come. We are going to upload a link to the website soon.

SO, what else has been going on???? Yesterday, we went to the pumpkin patch with some of our friends. We had so much fun getting the kids together and taking some pictures. Julie had everyone over for a wonderful lunch and play session. I am so blessed to live close to great friends that I have known for so long. Most of them went to Baylor! We all live in a one mile radius of each other and it is so much fun!!

One of our dear friends from church, Mrs. Ashley Grimmer, ordered some wonderful prayer bracelets for James Thomas and Luke. They say, "Praying for the Besties!" When Melissa and I were pregnant we would talk about how the boys would be best friends whether they liked it or not. So, sweet Ashley had the bracelets made. I will set up a way to let me know if you want one soon. Then we can start mailing them out. Every time I look down at mine I say a quick prayer of healing for James Thomas and Luke. This is a wonderful reminder! Thank you Ashley!

We have a fun filled weekend ahead of us. Tomorrow is my birthday so James Thomas and I are going to start the day at our Mommy and Me music class at church. We have missed it the past few weeks so I can't wait to spend that hour of quality time with him. Then, the three of us are going to do some shopping and we are ending the evening with dinner out. I am super excited!! Saturday we have three great parties to go to. There will be lots of pictures of Mr. James Thomas Garrett in his pumpkin costume. (we wanted to switch his costume to that of a vampire ha ha but I couldn't find one) His dad has a great costume too so just wait for those pics.

We are doing well. Thank you again for all the love and support. The kind letters, emails, texts, calls, books, gifts, and meals have been so wonderful. God has really showed us his compassion and love through all of you. THANK YOU THANK YOU! James starts his job Monday so I am really NERVOUS about that. I have cherished and loved every minute he has been home since taking the BAR exam. I am so happy for him but will greatly miss my soul mate during the day. I love him so much!!!!

This post is too long. Happy Halloween and thanks for sharing this journey with us.

I was just reading in my new book, Jesus Calling. This is what it said for today, October 29th.

"Linger in my presence for awhile. Rein in your impulses to plunge into the day's activities. Beginning your day alone with Me is essential preparation for success. Your time of being still in My Presence equips you for the day ahead of you. Only I know what will happen to you this day. I have arranged the events you will encounter as you go along your way. If you are not adequately equipped for the journey, you will grow weary and lose heart. Relax with Me while I ready you for action."

Hebrews 12:1-3 "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart." It is all about perspective! Love to you!

Quick summary about our visit

2009-10-27T18:44:00.000-07:00

I will write more tomorrow but I know some of you are waiting for an update from our appointment today. We met Dr. Lakshmi today and got a final diagnosis. It is nothing new but there is something to say about finally knowing. He is diagnosed with Diamond Blackfan Anemia and will begin steroid therapy after he gets his 6 month immunizations. The side effects of the steroids are awful and the unknown of which ones will affect him and their severity just brings me to tears. I am trying to process it all and enjoy the time we have left before the steroid therapy begins.

I am praying about our relationship with Dr. Lakshmi. I think she is one of the very best with this condition but her empathy was not really there. I am such a relational person and it is hard to work so closely with someone who is more of a scientific person. Our social worker worded it perfectly when she said that she acts more like a surgeon than a pediatrician dealing with kids. I want the very best care for James Thomas but it is going to be hard for me to go to the clinic weekly, alone, and not have a doctor that I can express myself too. This is going to be a life long battle and I truly wanted to become friends with our doctor. I am trusting God to lead us in the right direction about this relationship and we will see what happens from there.

Like I said I am pretty emotionally drained today. I will update more details later and explain more of what DBA (Diamond Blackfan Anemia) means for James Thomas and our family. We were given lots of information to read and we have lots to learn. Thanks for the well wishes today and your prayers. We could never get through this without you. Lots of love!

PS We took these pictures when we returned from clinic. We love the cool weather because it gives us another chance to wear our cute pumpkin hat! I love this little boy so much. He is such a joy in my life.

Therapeutic

2009-10-25T14:13:00.000-07:00

Therapeutic, that is what this blog has become for me. It is a place I can let out some emotion and feel like I am

doing something for my precious son. My prayer is that each time someone reads a post they stop and say a little prayer of healing

for James Thomas and Luke. The Jones' are battling a

serious condition as well and my

heart hurts even more for them now. I now know EXACTLY what Melissa is feeling and thinking and I pray for peace for their family.

James and I got to go to Sunday School and church today. It was wonderful to see our faithful friends and get some much needed hugs. The lesson today hit home for James and me. We are studying Psalm 73 and our teacher talked about things that draw us closer to God. He said that ANYTHING that draws you closer to God is good. I know that James Thomas' condition has definitely drawn us closer to God but it is hard to say it is good. He talked about his wife having Leukemia and how only the grace of God got them through it but looking back it was good because it drew them closer. I agree with him completely except that it kills me that what is drawing me closer to God is hurting my baby. If James or I were going through this it would be a lot easier to accept but tears fill my eyes when I think about what James Thomas has and is going to endure. It hurts, it hurts a lot. Friday night Melissa and I were on the phone crying over all the possible side effects from the boys conditions. The unknown is so scary and we only want the best for our boys. They are so beautiful and innocent and I just want James Thomas to have every opportunity out there. (The picture of us in bed was taken Saturday morning when we were still a little down. We had the three of us in bed plus the two dogs. It felt good to just lay there as a family and be together. Excuse the way we look!) But, I will keep praying and reminding myself that ANYTHING that draws us closer to God is good. In service Dave Riggle talked about when things become too big then God is too small. Diamond Blackfan is too big for me right now. I have to fix this now. Diamond Blackfan is not too big for God and I have to hold onto that truth! I will close with the last 4 verses in Psalm 73, "Whom have I in heaven but You? And besides You I desire nothing on earth. My flesh and my heart may fail But God is the strength of my heart and my portion forever. For, behold, those who are far from You will perish, You have destroyed all those who are unfaithful to You. But as for me, the nearness of God is my good; I have made the Lord God my refuge, That I may tell of all Your works." Psalm 73:25-28 Isn't it amazing how God's word teaches right to us when we need it. This leads me to James and my prayer request from now on. We are pleading God for a miracle. We are asking him to work in James Thomas' bone marrow and allow it to start making adequate amounts of red blood cells. We know that God is BIG and we believe he can heal our son. When this miracle happens we won't let James Thomas be considered part of the 17% that go in to remission for some unknown reason. But instead we will tell of God's great work and let everyone know he was HEALED by our Lord, it will not be considered an unknown remission to us but a present day miracle!!!! We ask that you be a part of this with us so that you too can tell of His works.

Jim and Nancy left this afternoon. They came into town Wednesday and helped us get readjusted back at home. We had wonderful conversations and lots of GOOD food. We are so blessed by family and really appreciate their help. James Thomas got lots of LOVE and we thank them for everything.

My sweet friend Ashley stopped by today and brought us the sweetest plaque. It says, "God said it. I believe it. That settles it." She also told me of a really special thing she is working on for our Sunday School Class. I am super excited and so thankful for her support. I can't thank everyone enough for the outpouring of love, food, and gifts. Yesterday, I had an awesome present from a special friend in my mailbox, we also got a cookie bouquet this weekend, wonderful cards every day and not to mention everything that was brought to the hospital. You guys are amazing and we will never be able to express enough gratitude. I know I am leaving lots of things and people off so please know each of you mean the world to us and it has really helped us along the journey.

An exciting thing to announce!!! One of my best friends just passed court for her adoption. Karen and John Mark Hutcheson will be going to Ethiopia to pick up their son Kasheku in November. It has been a joy to follow their journey and we are so happy that they are finally getting their son. CONGRATULATIONS HUTCHESON FAMILY! We can't wait to meet your son.

Enjoy this Sunday evening! We will be going to clinic to meet James Thomas' doctor Tuesday. Her name is Dr. Lakshmi, and she is probably going to be our new best friend so keep that relationship in your prayers. I really like to feel connected with people, you guys know me!!! I am silly! Love to you all and thank you again for loving us.