Just a little update

Our family is spending the three day weekend together. It is very nice. I am happy to get to help out Jenni some. Granton had a check-up yesterday. It went well. They are a little concerned about a high amount of enzymes in his liver count but that was about it. The count is probably high because of all the drugs we have to give him. The good news is we were able to lower his doses again. He is almost done with his graft vs. host disease med, fk506, and we are looking forward to not needing to give it anymore. Granton is now proving he is all boy. He is all over the Ronny Mac apartment trying to get into things he shouldn't. It is so nice to see him able to move about so well. We are looking forward to the day when he will be all over the place in our home at Bolivar. Keep praying for that day when we are all together all the time again. Thank you so much.

New Pictures

Last weekend

Grantor has been doing well lately. He had a great weekend; we all did. It was perfect except for me mistakenly putting Granton’s G tube on the bottom shelf of the dishwasher to wash it. It melted and Jenny had to go to the hospital and get a new one. Other than that, we had a lot of fun. Jenny dressed him up in a tootsie roll costume and he participated in something called trunk or treat. A lot of area business and originations had volunteers give candy and little prizes out of the trunks of their cars. Ronald McDonald led the kids around the parking lot and it was a lot of fun and a grand affair. I am very interested in how Grantor acts in different environments. The first time he got to leave the hospital he was very quiet and just tried to take everything in. He was also like this on walks the first few times we took him outside. After a while he became more used to it and seemed more exploring. Grantor still does not get to go out very much. I knew this would be a big deal to him because we have kept him away from people as much as we can when we are outside the room. However, there were a lot of people around in the parking lot, and on top of that, most of them were dressed up in costumes. Of course we made him where his mask but, other than that, he was like all the other kids. We just pulled him around in the wagon and let him take it all in. At first he was very quiet and reserved and just looked all around, trying to take it all in. We would say “Granton, look over here Granton” but he was to busy trying to figure other things out to let us bother him. However, he did come out of his shell a bit. I don’t think Granton knows what candy is; but, I do know he knows what wrappers are. He loves wrappers! Once he figured people were letting him take things that were in wrappers out of sacks and buckets he participated much better. His main problem was he kept trying to take things out of his own sack. Also, someone gave him play dough and he would not let go of it. Another, big first for Granton was seeing a dog. I don’t know if he has seen an animal since being admitted into the hospital. Once we finally got his attention, he just intently stared at the dog like what are you. However, with so many other people in costumes, I don’t think the dog was as big a deal as it would have been otherwise. To make things a little more confusing to Granton, this dog happened to be dressed like a pirate. When the trunk or treat was all over he went back to his room. This is where he shines. He smiled and laughed with everyone. I noticed he especially laughed out loud when he was dancing with Shanna. As I think about our weekend I reflect back on one day in the PICU when we were basically told Granton would be gone in a matter of hours. I walked into his room and Jenni was poring over him. Her cheek was on his and she had put her hair, which he always liked to hold, in his little paralyzed hand. I listened to her talk to him. She was telling him all the reasons he needed to keep fighting and stay with us. She told him how much we loved him. She promised him they would take walks together and play games like pee-a-boo. She talked to him as only a loving mother can and painted life as beautifully as any artist ever could. I believe she is one of the tools God used to save his life. Anyway, if Jenni could have seen the future, one of the things she would have mentioned would have been last weekend. I think you all know what I will be thanking the Lord for when I say my prayers tonight.

When I got back after not seeing Granton for two days, I too, could tell a difference in his size. He looks older and fuller. Today, he weighed 8 kilos or 17.6 lbs. We continue to move forward and hope to be home soon! Granton's med list is getting shorter and shorter. He now has two official meds he is done with and one temporarily. His FK506 was weaned again today to .2. We are pleased with our happy, cuddly baby who is changing fast. Have a nice weekend.

Jenni

Not much news... which is good news :-)

Hey Everyone,

I know we haven’t posted much in a while. I look at this as good news because not much has happened. Granton just keeps recovering on his own time. His Mimi had not seen him for a while and noticed a lot of change since her last visit. She can tell that his neck is much less swollen. Mom also told me that his face, arms, legs and chest and belly is bigger. Granton has also learned to sit down after he stands up. He wasn’t having any trouble pulling up to a standing position but when he wanted to sit down he would just cry until someone helped him down. Now he has mastered it on his own and doesn’t ask for help anymore. Mom also taught him to slide off the couch that he likes to stand on. He loves to climb up on it and look out the window but he would fall off if we let him. Now he has learned to slide off and not do any damage to himself. Anyway, as you can see he is acting more and more like a normal kid. We can’t wait to be more like a normal family and all live under the same roof. Please keep praying for us. We feel so good knowing so many people are interested in Granton and our family. Thank You.

Daniel

Good Checkup

Granton had a good checkup. He gained another 1/5th a pound and now ways 17.4 lbs. The doctors have agreed with Jenni’s plan of only feeding Granton through the G tube as he sleeps at night. There are a few reasons for this. Probably the main one is that Granton has pulled out the tube a few times. He did it again yesterday. Now that he is crawling so much he catches the tube on things and his tube comes out as he moves. He obviously will not be crawling in his sleep so this is safer. Also, he is eating very well on his own so they are confident he can still get enough calories on this new plan. The doctor thought Granton’s neck looked better and decided they could lower his prescription where he won’t get as much magnesium or citric K. They also put a nitro stick on some extra skin growing around the Mickey Button of the G-tube. Jenni said it was a very long appointment but was happy it went so well. We are looking forward to getting the bugger home and all being together again. Thank you for all the prayers.

Granton takes a little trip to the ER

We have had a wonderful day. I got to watch Granton while Jenni was able to get away for a little Christmas shopping. This was great for two reasons. I got to play with Granton and I did not have to go shopping. He is a lot more mobile and loves to crawl all over me. He also doesn’t like to lie on his back much so I think he might make a good wrestler. He gets jealous and wants to be in-between his parents when they try to lie on the couch to watch a movie. Actually, we didn’t get to finish our movie because Granton had a little accident. In fact, we just got back from the emergency room. Mr. Granton’s G tube was pulled out. On top of that, the bugger though it was funny. He just laughed at his mom who was kind of freaking out. I am glad he didn’t cry about it. I think he was getting board and wanted to spice things up a bit. He was a complete ham for the nurse and Doctor in the emergency room and loved the attention they gave him. One of them remembered him from the PICU and could not believe how well he looked. Another nurse seamed a little surprised for all the information she received when she asked about his medical history. We asked for training on how to put the tube in so we won’t have to take him to the emergency room and expose him to so many sick kids next time. It really did not seem like a big deal compared to last time. Of course this time we were out of the hospital in under sixty minutes where as last time I took him to the emergency room we had to stay in a hospital for over six months. That’s a pretty big improvement. Please keep praying for this kid to make more improvements with out setbacks. Thank you so much for your prayers.