I praise you God, for Carter is fearfully and wonderfully made!

Sorry for the delay updating. You know how they say, if you don’t hear from the doctor, it must be good news. Well, if you don’t hear from me, it means the same thing. :) Carter’s bone marrow biopsy didn’t show anything of concern. There is still no explanation as to why he temporarily stopped producing red blood cells or why he has a high MCV. The doctors were encouraged, however, after the biopsy and felt a lot better. They were able to rule out anything serious at this point. They are going to continue following him every 3 mo or so to ensure nothing “evolves.” At last check, his hemoglobin was 10.6 and his MCV was 104. His hemoglobin is still below the normal low (11), but he is not transfusion dependent and can live a normal life at this level. He may always be mildly anemic, but it doesn’t seem to be affecting his daily life right now. I did read something online that said sometimes macrocytosis (large MCV) can be developed during recovery of Transient Erythroblastopenia of Childhood (his original diagnosis). I have not asked the docs about this yet, but if this were true, I would assume things would start to normalize. Not sure what is going to happen if his counts continue to read badly. He doesn’t go back until the end of May.

He saw Orthopedics last week and the curve in his back has not changed. It is a 24 degree curve. Dr. Loveless doesn’t think this will ever be an issue or that he will ever have to intervene to correct the curve. We don’t go back for a year.

His genetics appt was yesterday. Dr. Perszyk is basically monitoring his growth at this point. He had a bone age x-ray when he was 16 months and the bone age was 18 mo plus or minus 5 months. So, his bones were growing chronologically, which is good. At that time he had the height of a 7 mo old and the weight of a 6 mo old but his bones were growing at the rate they were supposed to. This just means he would be a small adult. At 2 yrs old he measured 29 ½ in and his estimated adult height was 4 ft 11 in. Based on his height yesterday, he would be 5 ft 2 in. He did another bone age x-ray yesterday. This will determine if his bone growth is behind, chronological, or advanced for his age. If it were behind, it would cause late puberty and give Carter more time to grow but it may not be until college age. If it were advanced, puberty would be reached early and this could cause him to be very short. We want it to be chronological. If it were either delayed or advanced, more tests would have to be run to determine what is causing his bone growth to either slow down or speed up. In my opinion, Carter is fine and will be exactly how tall he is supposed to be. I don’t think anyone can say for sure how tall your child will be. I would call all of this GUESStimates. He doesn’t appear to have any problems intellectually, physically, etc…. He keeps up with all the other kids his age with no problem at all and is a star on the ball field. :) The doc did say to be encouraging and not to always talk about his abnormalities. In other words, don’t make him think that something is wrong or that he is different. I don’t think this really applies to us now, but may later as he gets older and starts to understand more. Carter will be Carter and he is his own unique person made perfectly the way that God wants him. I’m confident of that and am not struggling in the least bit over his growth. I do feel though that it is good to have it monitored and I wouldn’t rule out growth hormones should he NEED them LATER in life, but not now and not without much research, consideration, prayer, etc…. This is where endocrinology comes in.

He goes to endocrinology tomorrow and I’m expecting this to be a long, informative visit. I know they will be looking at his bone age x-ray and will also order more testing which I will do. I don’t want to deny anything that may provide answers. I just want to be very careful. Sometimes, docs just want to throw “fixes” at you and it may not be the best thing. Carter is not even 5 yet and we have time. In addition, with us not knowing for sure what is going on with his blood, I would not want to do anything that could jeopardize his health in that area. For instance, if he were to start on a hormone, would his marrow even be able to produce enough blood for his rapid growth? Lots to think about and hopefully we will have more answers by summer. I am so thankful for doctors and medicine; I just want to be smart and discerning through all of this. I’m looking forward to seeing how genetics and endocrinology will work together. Dr. Perszyk even mentioned sitting down with both Justin and I later on to talk through everything. Finally, I am learning as I go and may sometimes not be clear or quite accurate. As I learn more and things are revealed, I will update. Thanks for your prayers!

Bone marrow biopsy

Thought I would start with some pictures to make you laugh!

Tyler got silly putty stuck in his hair and decided to cut it out with my kitchen scissors. I had no idea what was happening until after the fact! There goes some beautiful curls!

Look how high Carter's baseball socks come! He wore them all day and wouldn't take them off!

His huge uniform!

Vitals before biopsy.



Carter's bone marrow biopsy went well yesterday. Everything went as planned and there were no complications. We got there about 7:30 and we were done by 9:45. It was emotionally harder for me than I thought it would be. They allowed us to go into the operating room until Carter fell asleep. Of course, Carter started to cry when I put him up onto the bed. When they held the mask up to his face, I got upset. It was really hard. If we ever have to do this again, I don't think I will go back there. Recovery went well once I picked him up and rocked him. My Mom told him if he drank his apple juice he could go home. I don't think I've ever seen him drink from a sippy cup so fast! Afterwards, we went to breakfast and then to Sports Authority to buy him a red baseball bat - his new pride and joy! He took a good nap yesterday afternoon. I was a little concerned about his eyes. They were really, really red. Carter couldn't stop rubbing and whined often. After talking with the Dr and a nurse friend, I gave him some Benadryl and it seemed to help. He slept good last night and is pretty much back to normal today. He hasn't once complained of pain. I don't think he even knows what happened. I probably won't have any results until next week. This weekend is full of baseball games. I'm also doing the River Run. Should be busy as usual!

Things have been quite busy here lately. I think it's even busier than the holiday season. Baseball has begun! This year, both boys are playing which can make things kind of crazy. Not to mention, I think I may have overcommitted my husband. He is trying to help coach both teams. Carter is so cute out there! His size small shirt comes down to his shins. But, don't let the size fool you. He can definitely keep up with the rest of them.

My brother's visit to Charleston Southern went well. The coaches were very impressed with him. They want him to report to practice early Aug (I forgot the exact date). Once he "proves" himself, they will more than likely offer an athletic scholarship. Supposedly, he cannot "try-out" before hand because it is against the rules for a D1 school. CSU is a D1 subdivision school (not sure what that means). I do know, however, that their opening game is against the NATIONAL CHAMPIONS - THE FLORIDA GATORS! The game is in the SWAMP and you better believe I will be there. And, if my brother is playing for CSU, yes, I will be a Buccaneer that day! How COOL would that be to run out of the tunnel in the SWAMP! AHHHH! I know CSU will get eaten alive but the experience would be worth it, right?! My brother and Mom really like the campus. Please pray that the Lord will lead the way and make it very clear if this is where Ryan is supposed to be. Also, that HE will provide. It is a very expensive school and my Mom has applied for assistance. Hopefully, she will only have to pay for the 1st semester. Another great bonus is CSU is a Christian School. I was excited to hear that. Hopefully, Ryan will grow in his love for our Savior while there and hopefully, he will be around great people!

Carter is going in for a bone marrow biopsy this Thursday. It will be at Wolfsons Children's Hospital. He went to the doctor last Fri 02/27 and not much has changed. His hemoglobin dropped from a 10.7 to a 10.6 (not really that significant) and his retic dropped from a 1.7 to a 1.2. Retic is short for reticulocyte. A reticulocyte count is a blood test that measures how fast red blood cells called reticulocytes are made by the bone marrow and released into the blood. A high count would be good meaning his body is working hard to reverse anemia. When he went into the hospital his retic was a 0 meaning his body had quit producing red blood cells altogether. For awhile after his blood transfusion, although his hemoglobin remained low, his retic was high. That was encouraging to doctors and they thought that he was following the classic course for TEC. Now, 3 ½ months later, It seems as though his hemoglobin has plateaued at a low level and his retic has dropped back off. If he had Transient Erythroblastopenia of Childhood as doctors thought, he should be recovered by now.

In addition to this, his MCV is high. This means his red blood cell volume (size) is too big. This is called macrocytic anemia or macrocytosis. According to the lab sheet, a high MCV would be 87. Carter’s was 107 last month and 103.5 this month. The doctor said Carter’s should not be over 100 at all. The condition that is causing this is what needs to be determined. Why is this going on? I am confident the bone marrow biopsy will provide some answers. I have also provided the doctor with copies of every lab Carter has had done since birth along with NICU discharge papers. Hopefully, this will also help as they will be able to see his history.

To end on a good note, Justin got at promotion ar work. Effective 03/16 (my Birthday), he will be a Supervisor! God is so good!

My Brother!

I just wanted to share with you a little bit about my brother, Ryan, and ask for your prayers this Saturday. We are 7 1/2 years apart and have always been in completely different seasons of life. He was only 9 when my oldest son was born and turned 11 the day after I married and moved out of the house. Because we were so young and there is such a big age difference, we never really had the chance to develop that sweet brother/sister - best friend relationship while I was at home. I remember picking on him and making him scream just because. I was a selfish teenager and life was about me. ***Now he can take me down in less than 5 seconds and, yes, we still wrestle and, yes, I scream now! What mom always said did come true: He did eventually get bigger than me. :)

Over the past 6 yrs, he has been BUSY playing sports and doing normal high school stuff, like hanging out with friends, and I have been busy being a Mom and wife.
Our love for each other has always been there, but it wasn't often expressed and we didn't see or talk to each other much.

At the beginning of this school year (his Senior yr), I prayed that God would show me how to reach out to him. I prayed that he would provide opportunities for me to speak into his life and ideas on how to encourage him, bless him, and let him know how much I love him. God has heard my prayers and continues to answer. He has been so good to grow our love and care for each other. There has been difficult talks, there has been times where I've been so aggravated I've just wanted to knock him out, literally, there has been things he's done and still does that I don't agree with, there's been many, many tears, but God has been so kind to help us through and I've been able to speak truth into his life so many times. God has been faithful to bring much good out of each situation and I am sure He will continue to do so, as I know, more hard times are sure to come. God has also done and continues to do a good work in me. I feel I am getting better at extending grace and better at bringing gentle, well thought through words. The feelings I have for my brother can only come from God.

God has blessed Ryan with the ability to play football and it was during football season that I believe God began to work. He has played since middle school for University Christian and excels in the area of kicking. One of the ways I tried to encourage him this year was by decorating his truck, rain or shine, before every game. I also tried to leave a REALLY motivating, truth filled letter inside for him to read. Our verse became Psalm 18 and he wore it under his eyes every Friday night. He knew I was his biggest fan and his biggest prayer warrior. You could hear me screaming for him all the way from the parking lot. It was kind of obnoxious, but oh so much fun!! :) This past fall was such a bittersweet time for me and I am sure for him too. I cried several times when he would bust through the banner and run out onto the field. I hated for it to be over and I didn't like the idea that he may never play football again. This is where the prayer request comes in. Ryan is heading to Charleston Southern tomorrow and is meeting with the football coaches Saturday. Please pray that his visit goes well and that the coaches offer him a scholarship. Ryan has worked and practiced extremely hard in hopes of playing college football. His work ethic is motivating to me. My Mom has sent him all over the southeast to different football camps and he has received a lot of awards and recognition. He is also working with a recruiter and a personal trainer. But, up until now, he has had no offers. A lot of schools are interested in him as a walk on, but he is trying to get a scholarship. Please pray that if God closes this door, that I will be able to rest in the truth that God is sovereign and has a perfect plan for Ryan's life. And, please pray that I will be able to encourage my brother and family during this time. It's hard not to be anxious during this wait. Thank you so much! I will try to update when I know something.

Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

Hope you enjoy the pics! These are only a few as I didn't take all digital.

My grace is sufficient for you...2 Cor 12:9

Hope this encourages you as it did me. What honor it reflects on the gospel when we have faith and trust in the Lord no matter the circumstance.

God's grace is illustrated and magnified in the poverty and trials of believers. Saints bear up under every discouragement, believing that all things work together for their good, and that out of apparent evils a real blessing shall ultimately spring - that their God will either work a deliverance for them speedily, or most assuredly support them in the trouble, as long as He is pleased to keep them in it. This patience of the saints proves the power of divine grace. There is a lighthouse out at sea: it is a calm night - I can't tell whether the structure is firm; the tempest must rage about it, and then I shall know whether it will stand. So with the Spirit's work: if it were not on many occasions surrounded with tempestuous waters, we should not know that it was true and strong; if the winds did not blow upon it, we should not know how firm and secure it was. The masterworks of God are those people who stand in the midst of difficulties, steadfast, unmoveable -
Those who would glorify their God must expect to encounter many trials. No one can be esteemed before the Lord without many conflicts. If, then, your path is marked with many trials, rejoice in it because your life will provide greater evidence of the all-sufficient grace of God. As for His failing you, DON'T EVEN DREAM OF IT - hate the very thought of it. The God who has been sufficient until now, should be trusted to the end. - Charles Spurgeon

Tyler, my love!

Our oldest son turned 8 on 01/11. Unbelievable! Where has time gone? For Christmas we got a tent from my Dad and Step-Mom. So, to celebrate, we had a campout in our backyard. We invited some of his best buddies over. It turned out great and everyone got along so well! It was really fairly easy and something I would definitely do again. The boys stayed outside the entire time which made for an easy clean-up. They played and played and played - war, tree climbing, trampoline jumpin', basketball.... They kept busy. We cooked hot dogs over the campfire for dinner and then s'mores for dessert. When it was time to settle down, we brought them all onto the back porch and started a movie. Two at a time they came in for a shower. Once they were all clean, they walked to the tent and went to bed. It was a cold 40 degrees but they stayed out there all night. Justin was a trooper and slept out there with them. For breakfast we cooked pancakes and bacon. I took all of them to church Sun morning and released them to their parents. After that, I surprised Tyler and took him to Gainesville for the National Championship Celebration in the Swamp. It was so fun! It was the first time Ty had ever been. Now, I've got to take him to a game.

How grateful I am for the gifts God has given me - my children! I love you dearly Tyler!

More waiting

Carter's nurse called yesterday and said the doctors have decided to wait another month before ordering a bone marrow biospy. They want to see the results of one more blood draw. I said, "ok," and that was the end of our conversation. I asked no questions. Things were really busy at home when she called and I wasn't really thinking clearly. Of course, once things settled down, the thoughts started to roll. Why exactly did they decide to wait? I do trust the doctors are making the best decision, but it would be kind of nice to know how and why they came to that conclusion. It seems they are really trying not to do anything that is not necessary and for that I am grateful. Obviously, they feel things aren't too critical at this point and they have some time. Since yesterday afternoon, I have tried to feed on Scripture and other resources dealing with waiting, resting, patience, and anxiousness. I have found some great stuff and am going to try to share it with you.

Her is something from John Piper:

"Impatience is what we begin to feel when we start to doubt the wisdom of God's timing or the goodness of God's guidance."

"The opposite is a deepening, ripening, peaceful willingness to wait for God in the unplanned place of obedience, and to walk with God at the unplanned pace of obedience - to wait in his place, and go at his pace. And the key is future grace........hope of future grace beyond this life carries saints patiently through their affliction."

Lord, help me to patiently be able to wait and endure without complaining. Thank you that there is hope beyond this temporal life. I will one day live forever with you in a place without any problems. I pray that I will not let trouble diminsh my faith. Help me to remember that you have a purpose for everything and are doing a good work in me. Patience demands inner strength and that comes from you alone. I pray that you will empower me with strength and patient endurance.

2 Cor 4:17 & 18 "For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Update on Carter

Carter had an appt yesterday. His last visit was good so they decided to give his body about a month to do whatever it was going to do. At that time his hemoglobin was a 8.4 (the highest since transfusion) and his retic was still in the 4's. He seemed to be continuously improving and they didn't feel the need to keep sticking him every week. I was a little anxious about this appt because I wanted to know how he was doing.

The appt was originally scheduled for last Thursday with Dr. Bradfield but got cancelled and moved to yesterday with Dr. Gauger. I totally believe this was the Lord. There are 6 different oncology/hematology doctors and I was told they like to keep patients between 2 doctors. Carter had seen Dr. Pitel and who I thought was Dr. Gauger. Then, because neither of these doctors were available during a week when Carter needed to be seen, we saw Dr. Bradfield. Yesterday, when Dr. Gauger walked in and introduced herself, it completely through me off guard. I had never seen her before. I found out that who I thought was Dr. Gauger originally was really Dr. Bansal. This means I had seen 4 of the 6 doctors in practice. Not good. He didn't have a good following by any of them because he had jumped around so much.

Now, all the doctors are good but the real Dr. Gauger was exceptional! She was very good and she will be the doctor I request from here forward. She sat across from me and put Carter's file on the desk. We discussed Carter's history and went over a chart that had every reading on it since he started getting blood work. The good news is that his hemoglobin went up to a 10.7 (we're getting close to the normal low). She said she wanted to determine what Carter's baseline hemoglobin was so we know what is normal for him. I'm not sure yet how that will be determined. The concerning news is that the size of his red blood cells are too large. She said if the retic was high it would give some explanation but the retic had dropped to a 1.7. She wants to know why. Why are they so big? Per the chart, the size of his red cells have not been normal for some time and the numbers are increasing each blood draw. She feels a bone marrow biopsy needs to be the next step. Each Monday morning all 6 doctors have a meeting. She said Carter will be discussed at their meeting and she will go over her concerns with the other 3 doctors who have seen him. After this meeting, Carter's nurse will call with what's next. So, as for now, a bone marrow biospsy has not been scheduled. If it does get scheduled, it will probably take place within the next 2 weeks. Dr. Gauger also requested the blood from the lab so she could look at it herself. I really feel good about his care under her.

There are only a handful of things that could be causing the red blood cells to be too large. Most you cannot even pronounce without some practice much less spell. I didn't write down the possibilities because I didn't want to worry myself unnecessarily.

Thanks for your prayers. I will update when I know more.

107.6 MCV, retic 1.7, white count 3.81, platelets good