The Pirates Back!!

Yesterday, was Granton's 2 year check-up in KC. We started by going to the dentist. Granton doesn't have any cavities, yeah! He held real still while his teeth were being counted and cleaned. Then, we got his blood drawn which went very smooth. He only got one stick and didn't cry. They also drew up a larger panel this time and an unusual amount of blood came out easily! Next, we learned how well Granton's immune system is doing. I will list all the factors that his doctor pointed out to help explain the positive report. First, Granton's immune system has responded to the vaccines he received and he should be able to get the live vaccines in 6 months. Next, his immune globulins--iga and igm are both normal. And, last his b-cell count (the one we've been praying for) improved from 16% to 20%! Although 20% sounds lower than it should be, our doctor in confident that Granton's immune system is sufficient with 20% b-cells. Also, he said that last year at this time--when the retuximab completely wiped out all his b-cells, the doctor thought he might have to receive ivig support for the rest of his life. Now, he is optimistic that this isn't the case, which is huge for us!!! Dr. Dalal is confident enough in his immune system that he doesn't want us to give any immune support unless his numbers drastically change. His result was 401 down from 406 but still above 400.

Now, we do have some small concerns. After, speaking to the bone marrow doctor, Granton went to the eye doctor. The eye doctor told us that our little pirate has to wear a patch for a while until his weak eye gets stronger. Basically, he has a lazy eye and we go back in 3 weeks to check it and get an excuse to play in the fountains at crown center. :) Finally, we went to see the heart doctor. Where is Kaynee during all this you say? Thankfully, at home with her dad where--by the way--she was a fantastic little girl! We haven't heard any results from the EKG or pictures of Granton's heart.

I will add one prayer request if you think of it. Granton's hemoglobin (red-blood cell count) was slightly low yesterday, not too alarming. His red blood cells also tested positive for igg and should be negative. I think this means that his immune globbulin (igg) has coated his red-blood cells. This could be because he still has vivaglobin (immune support medicine) still in his blood stream from 2 months ago. Or, it could mean that his red-blood cells are about to be attacked again. Now, don't think too negative yet because other lab results like AST, ect. were normal this time, and last year when he became anemic they were not. Also, his complement cell was negative and last year it was positive. So, anyway we will test his blood again this tuesday to see the changes good or bad.

All and all we were completely pleased with our visit and Granton's favorite part of the day was seeing Thomas the Train on a big track in the waiting room. I heard, "Go Thomas, Go!" while he was eating his snack.

Jenni

Leveling out?

I know it has been a long time since we put any pictures on here.  I will try to do better over the summer now that I have a little more time.  Two of these are of the kids with the new member of the family, Capone or Pony for short.  Kaylynn loves all animals.  She was loving of Pony on her own and I was able to catch a picture.  Granton saw me and did not want "Kaney" (that is what he calls his little sister) to get more press then him so I took his picture also.  The other picture is Granton on the his first set of wheels.  He is still needs to study some more before he gets his driving permit.

I know many of you have been praying for Granton and his IVIG number.  To make a long story short, Jenni and I were giving him a shot once a week to boost his immune system.  We had to keep a certain number above 400 and the Doctors goal as 500.  Anyway his number got all the way up to 600 and tests showed his immune system WAS responding to germs.  So we were going to start weaning him off the IVIG shots and test his number every two weeks.  The first two weeks his number only dropped about 30 or so points.  The next two weeks it dropped by nearly 100.  I think some of the IVIG meds were still being absorbed from his fat the first time and that is why the number dropped so much more the next time.  Anyway, the next go round he dropped another 30 some points to 436.  Remember we have to stay above 400.  Next drop was only 13 points to 423.  We just got his latest number on Friday and the number only dropped 7 points to 416.  We are getting very close to 400 but the number is starting to level out.  The doctors have decided to keep watching it and see what happens.  We agree.  If we give him the shot, his body will not think it has to make that stuff.  Granton did get a fever of 102+ but it dropped and the next day his temp. was normal.  He also got a real bad caught and was coughing all night long.  He sleeps across the hall and I can hear him coughing.  It brings back bad memories of when he had phenomena and could not improve.  I basically don't sleep when he is coughing.  However, I am happy to report his cough is going away.  He only coughed three times last night.  This is good because we were told to watch this real close as the Doctors were concerned about it as well.  This is just the latest time I have been reminded through Granton to TRUST in the Lord and pray.  That is what we are doing.  Specifically, or in the short term, I am praying for his IVIG number to level out and start to climb.  But I mostly just pray that he will have a normal immune system.  Actually, Granton prays this every night as well.  I read him a bible story and then we say prayers.  I coach him through it but he pretty much has it down.  He always ends his prayers saying to Jesus  "I love you, Amen."  Then he roles over and and says "night, night Daddy."  and I walk out.  As I walk out I often to pray for him and thank God that I am not walking out of a hospital room after tucking him in like I did so many times at Children's Mercy.  Thank you for your continued prayers you will never know how much they have meant to my family.

Granton's labs came back with more positive news again. His number dropped a little more, but not enough for ivig yet...still above 400! It only dropped 13 points this time--a lot less than last time.

Kaynee proudly wore her red sneakers and white beads during the National Anthem yesterday at the track meet. Her true blue nature shown through as she placed her hand over her heart. It was the sweetest thing no doubt...but even better in the buff! I was changing her poopy diaper right as the stadium stood up and went silent. She was doing her utmost to honor the flag while we were doing our utmost to stop laughing and do the same!

By the way, there is a busload of kids traveling to State...more than years past.

Jenni

Field Trip

Today, Kaylynn, Granton and I took a field trip to the doctor's office. After signing in at the lab desk, the kids and I found a spot in the corner of the waiting room by the magazines. I pulled out a Sesame Street book for Granton to read called "My First Haircut" and gave Kaylynn some connecting rings to play with. When the book was finished, another patient in the area noticed Granton's new hair cut. He said, "That's the way I used to cut my boys hair." Granton felt his head and responded proud. I looked at his buzzed hair and said, "He won't sit still long enough for anything fancy."

Next, Granton got distracted by a big juicy hamburger (by the way I was fasting) on one of the magazines. I thought he sounded funny as he pointed out each layer of the burger like it was a body part--"onion, pickle, meat..." I said, "Yeah, what else do you see?" Granton said, "lettuce, mato...oh, like Bob the mato, Mom!" He's been real excited about watching Veggie Tales lately. Anyway, I felt desparate to get the boy a hamburger after listening to him.

Then, the time came for us to face reality and do what had to be done. A nurse came out and said that Granton would have to wait till tomorrow for labs, but they would go ahead with mine. So, I packed up our stuff and headed back nervously to get stuck. I sat down in the chair almost forgetting about the two babies I brought with me. When I realized where they were I directed them to sit on the floor in front of me. Even little one-year-old Kaylynn listened to my voice and sat right next to her brother like I expected her to be in kindergarten or something.

I cautiously told the nurse that I wasn't as brave as my two-year-old son--which was no lie. She new Granton from the many times he has been through the lab doors before. But, she didn't know my brain was in panic mode while I delivered my calm understatement. I turned my head away from the four viles sitting on the counter and closed my eyes before she was even ready. Then, I decided to get tough and focus on my little ones as the nurse politely exclaimed that the lab was short-handed today. Oops. When I opened my eyes to watch them I glanced and saw the needle standing straight in the air. Bad move. So, I started all over again with my eyes closed.

As soon as I felt the needle I could hear her say relax your fist now, but I'm sure my face was still grimacing. I was hoping not to pass out like last time, especially with the kids there. However, just when I thought the damage was done I could feel the needle move and a horrible grunting sound came from behind my clenched teeth! I didn't remember having this sort of pain from blood draws in the past. All I could think was "Granton, can you sing Mama a song?" And, that's what came blurting out of my mouth at least twice before I heard my sweet baby's voice. He was still, miraculously, sitting in the same spot singing "Away in a manger no crib for a bed."

I don't even know how many lines he sang, but I recall the nurse saying, "aawww, how precious." You would think that's all I would have needed to press on, but as usual, "the stars in the sky" were spinning all around me now and big baby me fell asleep in the wheel chair they rolled to my rescue. I was holding my head down in my hand thinking to myself, "labor pains felt more normal than the way I feel now!" But, thankfully, God was watching over me and the two toddlers as the busy staff had to leave us on the ultrasound bed until I felt able to walk again. Luckily, I wasn't down as long as the time before (or maybe that's because I couldn't be).

I walked out of the doctor's office so proud of my son for all that he's been through and the comfort he gave me. He was my hero today, and I told him later at nap time, "thank you for singing to Mama when I didn't feel good." He said, "at the doctor's office?" He had just finished eating his big juicy burger from Sonic that I felt happy to give him on our field trip!

Jenni

Just a brief update. We can answer your call now. This is our 5th phone for the year...all the accidents involved water of some sort (creek, kiddie pool, toilet, you name it). Needless to say the $200 touch screen phone with gps that the salesmen showed off did not tempt me just yet, well maybe a little. But, definitely not child-mommy proof!

We have a chicken coop now and we're getting about 3 eggs a day which is nice. The chicks finally know how to navigate their way back to the pin. Daniel and I had been rounding them up from the woods until Monday night. I've been a little upset with Capone lately. He has either sat on or tried to dig up my flowers in the new flower bed I made. Lucky for him, he has this pitiful wrinkly face and a sweet personality that can't keep me mad at him for more than a day/half a day.

Kaylynn's saying more and more words--hat, egg, see ya, dog, diaper, stop sign--all pretty random. Granton is still reading lots of books now with more words. We buried some toys and had a dig the other day while I was planting our garden. He is fun to play with. He got hooked on a book called Bossy Bear and now we've been reminding him of the lessons several times a day.

We will let you know what his lab results are soon. We were supposed to get labs today, but mom forgot...oops.

Jenni

Improvement

We are excited to report that Granton's immune system is now showing signs of function according to his labs! Of course, we can see the physical signs, but now we have the proof, internally, too. His igm levels that have been in the 400-500 range are now at 600 (500 had been our goal). Also, Granton's antibodies are working. His body responded to the vaccines he received. These vaccines are the same that Kaylynn has received this past year and any normal child is encouraged to get. And, because of the lab results, Granton's doctor now wants to start weaning him off of his vivaglobin (immune boost medicine)! We will go back to his ivig as needed so that his body has a chance to recover on it's own and doesn't rely on the ivig support. So, instead of once every month, Granton will probably have his medicine spaced out with more time between each infusion depending on what he needs. This has all been great news for us to receive and on a special birthday...Kaylynn turns one today! Our family is celebrating here in Bolivar. We can't thank you enough for the prayer support you've given.

With lots of Love,

Jenni and gang

P.S.--The b-cell results have also come in. They are still at 16% donor cells...slow but sure.

Easter Greetings

We did get some results back from the tests, however they were not about his donor B Cells. Right not we have to give Granton a shot if he gets a temperature because his immune system is not at full strength. His adrenal number needs to get to 18. Last time they tested it it was 12.7 and they were hoping it would be up where it should be. Well, it wasn't, but it is going in the right direction. The new number is 13.9 so we still have to watch him close and give him the shot when he needs it. The good news is it is going up. We will test him in about another eight or nine months and see if he has reached the magic number. We are still praying about b-Cells. As you can see, Granton, and his sister are not concerned with this at all. He loves to let his light shine. (He dances in a video that we can't get to load in a limited amount of time...too long). This being Easter, with all the added significance this day has on our family, I am reminded again of how we should do the same with just as much energy as he has. Thank you for your continued prayers. We wish you a very happy Easter.