Monday, March 29, 2010

Great weekend

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!

Friday, March 19, 2010

Spring Break

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!

Monday, March 15, 2010

Not quite what I expected

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.

Sunday, March 14, 2010

Back at TCH

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.

Sunday, March 7, 2010

sick sick sick

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!