Day 3 Family Reunion 07/09

wake boarding and playing in the lake

Day 2 Family Reunion 07/08

Eat, Tube, Eat, Tube, Eat, Swim..... That sums up Day 2!!

Day 1 Family Reunion 07/07

Arrived at Chesnut Bay Resort in Leesburg, AL yesterday evening after 8 hrs of driving. The resort is on Lake Weiss. Ryder was pretty difficult in the car. Driving to Colorado will be interesting for sure! We were on the boat tubing in no time at all. We ate hamburgers and hotdogs for dinner and then enjoyed a great firework show. Most stayed up until the wee hours of the morning playing games, but not me. Ryder would not have that! At 4am, we were awaken by the fire alarm. The boys and I were sleeping in the basement. I didn't know if it was false or not, so out the door we went following all fire alarm drills - stop, drop, and roll (not really). Thanks electrical problem for waking my kids.

I was hoping to post pictures each day, but it takes a very long time to download. I will try my best.

Back to Blogging

Well, it's here.... My last night in my beloved hometown, Jacksonville. Jacksonville - where I was born, where I was raised, where I met my husband and best friend, where I was married, where I made my first home, where all my children were born. Jacksonville - where my family is, where my best friends are, where my heart will forever be! Oh, how I am so grateful for the past 28 years! And, how I am grateful that I serve a God who is much wiser than me and whose plans are far greater than my own. I can recall saying "I would never" to 2 things: leaving Jacksonville and skiing. But, God in his humor is leading us to Colorado. Yep! Colorado. To say the past 3 months have been challenging would be an understatement. Packing the home we've lived in for almost 10 years, living out of a suitcase in the middle of my grandparents dining room, being without my other half, preparing to be a landlord, imagining how on earth I will survive without my family.... these are just some of the things that have worn me out physically and emotionally. I have cried many tears, but I believe God has used this time to prepare my heart.



I am so ready to be with my husband and to have some sense of normalcy and order again. I am so sad to leave, but am looking forward with anticipation to all that the Lord has in store for us. I know He has great, great things for us and that He will grow us in ways I can't even imagine. I know He will stretch us and will draw us closer to Himself and each other as we wholly lean on Jesus name! I know He has gone before us and has prepared a way. And, I know how faithful and good He has been to us in the past and that truth brings much hope and excitement for the future. He will not fail us! Now, it is your job to remind me of these things when I am in the pit! Because, I know there will be days like that. This is an adventure! Another chapter to our pretty amazing story. Sure, it's going to be hard and especially at first. But, WHAT'S HARD IS GOOD AND WHAT'S GOOD IS HARD, right? This is something I have repeated over and over again lately.



My plan is to get back to blogging in an effort to stay connected with loved ones back home. I plan to update very frequently with pictures and stories of our "CIRCUS" life. Make sure you keep your eyes on the center ring and watch as we juggle and spin many plates all while trying to balance. The silly clowns may show up, the dare devil boys might defy all odds and perform some never before feat, and I might just lose it and come swinging down from the ceiling in some high flying fit act!



I leave tomorrow for Alabama for our annual family reunion. Justin will join me Wed night and we will leave for Colorado Sat morning. Please pray for our entire family. There will be hard adjustments.



See you real soon Jacksonville!

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!