Christmas Pictures

Granton's Christmas was a wonderful experience! He took some great photos on Thursday and this was our favorite. Dad read the Christmas story and when he said, "Let's pray," Granton closed his hands together for the first time. He has also learned to give high fives which he laughs about, and he rocked out on his keyboard set which we saved for Christmas Day (complements of the Berk family). We laughed at him as he learned how to amplify his voice on the microphone. Also, we made a tent and a birthday cake for Jesus. Dad got to shoot his guns out in front of the new house and the rest of the day we spent playing or eating together! We truly had a blessed Christmas Day. :)

Love,

Daniel, Jenni & Granton

Upswing

I am happy to report that Granton seems to be doing better.  His temperature is normal and he slept through most of the night.  This is a great improvement from the night before.  His new little white blood cell commandos seem to be doing their job.  Praise the Lord.  He has been sneezing nasty gunk up all morning.  I don't have much time to post anything else considering I have spent way too much time fighting with this computer over posting a picture.  The computer won.  See Grandma Ball, you are not the only one who has trouble with these things.  I will post more when I can.  Thank you all for praying.  I think he is on the upswing and hopefully we won't have anymore scares for awhile. 

Little Whirlwind

Seems like things from mom's perspective are more along the lines of doctor's visits and meds. Lucky for Daniel, he does not have to deal with the needles and iv occlusions as much. He doesn't know it yet, but we took our first trip to the ER since we've been back home. Everything went smooth except Granton's veins, of course. We're very used to it, but I have never had to watch him get stuck 11 times in three hours before! His veins just weren't cooperating today which made the situation frustrating for everyone involved. We got the blood cultures drawn up ok, but the iv went bad and had to have another put in. I guess I should explain what we were doing at the ER. Granton has had cold symtoms this week (runny nose basically). The past two nights he's woken up 4 or 5 times and seems very restless. Then, this morning he felt hot so I took his temp. and it was 100.4 which is the number for emergency action. I called Children's mercy and they had me go to the ER in town. Granton got a stress dose of steroids and his emergency antibiotic. Thankfully, his fever went down even before he got his antibiotic and he did not have to be admitted in KC! He is still eating, drinking and laughing...just needs a good nap and kleenex every now and then. I was never alarmed but boy am I glad we don't live in a room with alarms anymore!

On a more upbeat note--Granton continues to gain weight and he gets heavier all the time. We are happy his mickey button is healing up so well. It looks like a small scab now and we just protect it with a bandaid which won't irritate his skin. Hope you all have a Merry Christmas. We are going to have a family day with Granton Thursday and bake a cake for Jesus Birthday. :) Daniel hung up lights around the balcony in our new house and Grandma Sandy and Aunt Rachel put up our Christmas tree. Along with the fireplace, the livingroom looks beautiful. One more thing that was funny. Granton had his first shower since he's been home (he takes baths). He lounged in a portable tub with the water splashing him. He didn't try to crawl out or anything. He just sat back and enjoyed it...he looked cute. I'll try to post some pics later.

Love,
Jenni

P.S.--Thought you might like to know that the rash around his neck is going away with hydrocortizone cream which is a praise. I really think it is dry skin and not signs of GVHD.

Here are a couple of pictures I thought I would share since we have not posted any in a while. These are about a month old though. They were taken in Kansas City.
Hope everyone is having a wonderful time during this Christmas season.
Aunt Neese

No news is good news

I just thought I would check in. We don’t have anything news to talk about with Granton which is a good thing. We are still watching the rash and I am sure it is not getting bigger. This kid is starting to eat everything. Last night he ate chili with Oreos and followed that with rotell and chips and strawberry milk. He is getting into trouble more. We have started to flick his hand after we say “No, No don’t touch Granton” and he touches whatever it is anyway. He has been pricked so many times and he has had so many painful things done to him that he just looks at us with questioning, and perhaps a little bit confused, eyes as if to say “What are you doing? Was that supposed to hurt or something?” He also likes to aggravate his mother and stick his arm and leg through the bars of the railing on the second floor because he know this freaks her out. It doesn’t bother me because I know he can’t fit through. However, I have to admit I think it is a entertaining to see him push Jenni’s buttons. He is like his dad. He thinks it is funny to mess with people. Anyway, we are doing very well. I think Jenni will probably make the next post over the Christmas break. I am sure everyone would like to see things from her perspective for a switch. Thanks again for praying and please keep it up.

Lots of news

First of all, I am sorry for the long delay on an update. I have some real good excuses for taking so long, but I hate excuses so I will just leave it as an apology. However, I do have quite a bit of news. First, I will cover the G-tube. We spent most of the day on the phone with doctors on the same day I made the post. Jenni also took Granton into the local hospital, also called CMH which makes things confusing, and had a nurse who works with G-tubes all the time look at him. To make a long story short, Dr. Jenni removed the G-tube that night. We have been dressing the opening and it is healing wonderfully. We have also been given an NG tube. This is the tube that goes through the nose. Most of Granton’s old pictures on the blog have a tube going in his nose. That was a NG tube. We don’t need the tube unless he gets sick suddenly and we have to use it to keep him hydrated. Now I will share the new news we have from his last checkup which was yesterday. Granton’s check up was very long. He and Jenni left at about 9:30 yesterday morning and did not get home until after 8:00 last night. They did all kinds of things done to him. He had an IV and some shots on top of his normal stuff and Jenni received some more training which took a long time. However, they won’t have to do that as much because he only has to go to KC every two weeks now which is an improvement. His blood pressure was kind of high, but he was not able to eat lunch until 4:00 and he had been stuck quite a few times by the time they took it. Jenni thinks the blood pressure was high because Granton was not a happy camper. Although, he did make the doctors happy when he got on the scales. They toped out at 8.9, which is 19.58lbs. Granton is now in the normal percentile for his age! We are still working on this because he has a new nutritionist and she wants to see him get to 10. Another good report is that Granton has shown enough improvement that they are going to start weaning hit steroids. This process should take about five months we hope. Almost everything from the checkup was good. The doctors did show concern about Granton’s rash. It is back, and as I have stated before, it is a sign of graft vs. host disease. We have a new cream for it and if it is not gone by the 29th we have to report to the doctors and I think they will run a bunch of tests on the little man. Please pray this is not G.V.H. disease and that the rash goes away. We are still “looking up” for answers and guidance. Thank you so much for continually praying for us. You have been so faithful and your support means so much to us. The Kansas City Star is actually going to do a story on our blog community because of your continual interest and support for the little guy. So we are all going to be in the news. I have been recognized a few times by people who saw me on the news, but I am recognized more by strangers who read our blog. The cool thing is people who read this blog feel more like family than strangers to me. I think that is what the newspaper’s story will be about. We will just have to read and find out. Speaking of the paper, I was told Granton has made the front page more than anyone besides the mayor this year. I will try to post sooner next time and thank you for your continual prayers.

Prayer request

Today I have a prayer request for Granton. We have noticed his Mickey Button has been extra tender lately. Granton handles pain very well so we try to pay extra close attention to him when he complains. Yesterday he was crying, no he was actually screaming, out in pain when Jenni bumped his button, (we also call this the G tube sometimes) however, he did eventually calm down. Then the same thing happened again last night. I think it is getting infected. We are calling the doctors today about this. Please pray for the doctors to have wisdom and make the right decision with Granton’s care. Thank you

This is a picture of the guy at breakfast this morning.

Eating

As most of you know, Granton had to relearn to eat.  I am pretty sure he has mastered this skill. 

Fresh pictures of the man

I am finally getting post some new pictures.  As you can see above he did not know what to think about Santa.  

Daniel and Jenni have had some trouble posting pictures so they sent me with some of them to post for them. This is several weeks ago but here is his first hair cut and the finnished product. Mom did a great job.

Aunt Neese

Granton had a great checkup and he was a good boy on the drive to KC and back. He gained a little weight. He is up to 18 ¼ lbs now. Other than needing a little zinc, all his lab results were fine. The doctors added zinc to the list of things we give him. They said it should also help his skin. However, his rash was nearly gone anyway. Jenni prescribed her own medication that she was giving him for his neck before the Doctors asked her to change to something else. His rash got worse with the new stuff so she went back to what she was using and it is nearly gone. Jenni reminds me of the father in “My big fat Greek Wedding” who uses windex to fix everything except her fix all is triple cream butt paste. The doctors and nurses were very happy to see Granton and I think he missed them also. Jenni said he was excited to be back in the infusion room. I can see why because he has spent most of his life in that hospital. He also loves parties and they gave him another one. The staff had more presents and cake for their buddy. They said he has changed a lot since they had seen him last. Speaking of seeing him, we want to get some pictures on the blog but in the recent madness we have misplaced our camera. As soon as we find it I make sure we post some pictures. Thank you for keeping interested in Granton. We plan to keep posting every few days or as soon is there is any news on the little man. God Bless You,

Daniel

Ivory

Granton has been doing pretty well lately. The baby in him is fading and the toddler is kicking in. He really seems happy to be home. Granton has learned how to point and now he points at everything. He has also started making a clicking sound with his mouth by sucking on the side of his cheek and pulling his tongue away so the sucking sound makes a “click.” We have also noticed him drooling a lot where as he used to not drool at all. Jenni thinks he has been fussing a little more lately as well. We did not know the reason for this because he cut all his teeth months ago. Well, we are first time parents and still learning. Last night Jenni discovered a molar equal in size to an elephant tusk cutting through his gum in the back of his mouth. I thought he was too young to get molars but I am still learning and this guy is teaching us so much. Otherwise, he is doing well except for the nasty rash on the back of this neck. This rash causes caution because a rash can be a sigh of graft vs. host disease. Last time the Doctors thought it was because of dry skin due to the dry atmosphere. We pray the report will be the same on his next checkup Thursday. Of course we are always praying for his continual improvement and we thank you for doing the same.