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.

BIG guy

We are excited to share some big news. Granton got bigger. I would say he got a lot bigger. His last weigh in was 7.336 Kilograms, which is 16.14 lbs, and at today’s weigh-in he topped the scales at 7.816, which is 17.2 lbs. He gained over a pound from Monday to today! Jenni said this was the first time the doctors and nutritionist did not seem overly concerned about him. However, they did tell her it was a pretty slim chance he would be home before thanksgiving. We are happy he still has a chance to do it and if he doesn’t make it home by then we will be thankful and give thanks in Kansas City. They gave Granton a drug to bring up his iron level up and they lowered the amount of magnesium and FK506 they give him. We are very happy for the good check up. Please keep praying for the little… um… I mean, the BIG guy!

Strong Boy

Well, I just thought I'd add to Daniel's blog a bit so you know I'm not discouraged. Granton's calorie intake during the day has gone up significantly since he's been drinking the soy milk and boost. We have been able to cut back on his continuous feeds (feeding tube) during the day because he is takes in well over 1000 a day by mouth now. This is a huge step for him and a blessing that he is able to move around more--catching up to a normal one-year-old. He feels heavier and meatier and his loose stool problem is finally resolving. The past few days has really made me reflect back to where we were and how I didn't see this far into the future. Granton has been a laughing, playful little guy and it brings lots of smiles to my face. :)I thought about how strong he is for surviving all his hopeless conditions. And, now he is starting to look like that strong boy!

Jenni

Good news and bad news

Let me get the bad out of the way first. Granton lost weight. Jenni told me how her heart sank when she saw the scales. Everyone has commented on how much fuller his face is and on how his ribs don’t show as much. We were looking forward to the weigh in to see his progress. His last weight was 7.5 and this one was 7.3?? something. Jenni was afraid they would want to readmit the little dude. However, she said the doctor and staff did not seam to make a big deal about it. They commented on how much better he looks and on how much more active he is. He is a lot more active and someone at the hospital commented that with him burning all that new energy he may be burning off the extra calories he is getting and keeping. Now I will share the good news. Granton’s lab results looked very good. The team was very happy with them. In fact, they decided Granton did not need one of the medications he has been taking and he will have one less drug in his system now. We are very happy about this. Please keep praying for the little guy. We are praying he won’t be so little anymore. We are also praying for him to continue recovery without setbacks. I also want to express my gratitude to all the people who show interest in my son and continually check this blog. Can you believe this sight has had nearly 1/3 a million hits? Thank you.

Big Boy, Big Brother

Today has been a gorgious fall day here in Kansas City. We took Granton to a nearby park for a picnic to get out. The neighborhood was in a historic district, so the park had lots of tall old trees. Granton enjoyed swinging in our laps, and we enjoyed hearing him laugh under his mask. He has been so happy lately and making me happy to see him drink and eat so well. We received some high calorie soy milk and juice from the nutritionist and Granton loves them both! I went to the hospital to get more in hopes of tipping the scales on Monday. Speaking of weight, Thursday's weight was probably more than Monday instead of the same. On Monday, he weighed on an adult scale wearing clothes, and Thursday he weighed on a baby scale without clothes. After I thought of this, I felt much better and am expecting good results at our next visit. I will also take the initiative to find the same scale everytime when we arrive at our appointment as I did Thursday. Hopefully, the team will be less likely to remind us that they are worried about his weight if the results are more consistant and accurate. Despite the scale issue, he acts and looks healthier this week than in the past and we are feeling more confident in his progress.

We are also pleased to announce the upcoming arrival of Granton's little brother or sister! We are due in April around Easter. Along with our new blessing, Daniel's sister surprised us by announcing she is due the same month. We are all shocked and excited at the timing of events.

Happy Saturday,
Jenni

Our visit to the doctor has been informational. Granton was lowered again on his immune suppressent drug. If his lab results show that he is tolerating the changes successfully, that means his immune system is functioning properly. He should be completely weaned from the Fk506 by mid-November. About two months later they will do a cell-maturity test. Otherwise, we can tell how well his cells are functioning by how well he can handle being weaned from the immune suppressent drug.

Granton has had hardly no diahrrea lately. His stools are more formed and we have had some wet diapers, as well! I am excited because I think this will keep him feeling good and not miserable and eventually allow him to gain more weight. Today, he weighed exactly the same again, 7.5, which has been a consistant number for a week. The good news is that we are not having to back track like before. I'd rather see the same than less. Plus, he is eating more than I have ever seen before and more than that he loves to eat. Everytime, he's in his highchair with grown-up food that he can feed himself, he gives lots of smiles. I gave him adult size portions of tuna casserole and green beans last night. And, he drinks at least 12 oz. of fluids easily from a bottle.

Before we are sent home, we will need to be seeing the doctor only once a week instead of twice. Next Thursday we don't have to come in as early because they won't be looking him over. They will just draw labs, which is a start to the one day a week appointments. Also, Granton's lab results must show that he can handle being weaned from the Fk506 (tacrolimis). In the doctor's mind, we should be home before Thanksgiving. This is a change from the end of October. We will just pray for no setbacks and see where that leads us.

We have seen some great milestones in the past week that I'm very thankful for!

Jenni

Granton had a good day. I am still having tecnical dificulities. The SD card will not let me see what picture I am posting untill after I post it. So anyway, here are just some random snap shots. I was not able to turn them so you will have to turn your head to look at some of them. We had a great first birthday and we are praying for his progress to continue.

Granton has had a good check-up today. The doctors got to see him stand and crawl forward. They were pleased with this progress. Also, the bump on his neck has gone down a little and hasn't been red since the antibiotics were started (which are now done). His Fk506 (immune suppressent) will be lowered on Thursday. And, the big news is that, provided we don't have any setbacks, we might come home in three more weeks.

Granton received more fun clothes and toys on Saturday. He got a car that looks like Lightning McQueen from the movie Cars and he scoots backwards on it with his feet. It's real cute. Also, he loves his new doctors kit--we think it's because that's all he knows. Plus, he's played with a new singing and dancing Handy Manny tool set, drum, bells, rain stick, shape sorter, and rolling horse. We went through some of his older toys to give to the Ronald McDonald kids so that mom doesn't have to keep up with so many.;) We've read his new birthday books, too, and he is paying better attention when we play or read. I love to see him moving around more and becoming active. Daniel will post some of the birthday pictures when he finds time.

Jenni

Well I think it is pretty safe to say that Granton loves birthdays. He loved all his visitors, he loved all his presents, especially his new toys, and he loved his cake. He really loved his cake. That was probably the most solid food he has eaten in a while and he managed to make a big mess in the process. We haven’t let him play with all his toys yet because we want save some when the newness wares off the others. However, I think it is going to be a long time before the newness wears of his red car. He likes to have people push him around on it. He is still trying to find out how to honk the horn and reve up the engine. I am sure he will figure it out. He had a great time playing with Aunt Snanna. She can always make him laugh. We had a wonderful time. We said a prayer before his birthday dinner. I am so happy I got to thank the Lord for a year with Granton. This year has taught us so much. I am sure it has taught me to be more thankful for little things like holding my son and wife’s hand in prayer before we eat or whenever. Speaking of prayer, we are praying he gains weigh without any setbacks. The little guy has a checkup tomorrow and we will see if he has had any progress in this area. Personally, I think this could be the best Granton has looked since Christmas time last year. We are so thankful. We will try to post some pictures later.

Granton's First Birthday

We have had celebration number three now with dad and more on the way! Yesterday, Child Life brought him a lemon confetti cake with Happy Birthday on top. He wore an Elmo hat and shared his cake with all the friends who came to the party. Granton didn't dive right into the cake. He poked his one finger at it and played with the fork wiping icing across his face! He got a really neat barn toy with 3-d blocks that plays music when you drop them in. We've been playing with it all day. Also, he got a pop-up animal book, a baby Noah einstein movie, and a bright red star ballon with a birthday balloon.

Today, we opened more presents and mail with dad. We got many birthday cards from grandparents and friends with Granton bucks! Also, thank you to Grandma Jeanette for the Thomas the Train toy and book; Aunt Nise for the Elmo book, cell phone, bubbles & letter magnets; McCullahs for the cool Leap Frog magnet fridge barn which we've been entertained with lately; Cousin Dalton for the football sweats and book; Grandpa Max & Grandma Donna for the baby Mozart movie and long sleeve football shirt; Little Reni & fam for the fun keyboard set--we're saving it for Sunday to play in front of company; Gerald & Viva for the Thomas the Train flashlight toy; and Mrs. Stanek for the Barnyard Dance Book!

There's more to come. I'm quite the party animal here! I am officially crawling and getting into things. I got into mom's mailing labels today and watched her peal them off of me as she stuck them on her envelopes.

Love from Granton, Daniel & Jenni

UnBirthday Pics

These are a couple of pictures we took last weekend. I knew I would not be able to be up there for the pig day so this was from an early birthday celebration. I know everyone always wants to see the little guy.

Aunt Neese

Grants Birthday Present

Hey this is Uncle Dustin. Daniel just called me & wanted me to post this for him, he said that Grant had a very fun & busy birthday. He said his SK506 was reduced (he said that is an immune supresent) but the big news is that Grant got a great birthday preasent wich was gettin to go back to the Ronald Macdonald house! Well anyway that is all the update he gave me. thanks for reading

Well, unfortunately the biopsy didn't tell us anything. As I said earlier, they didn't remove any nodes, just fatty tissue and the puss didn't show any specific infection, either. The antibiotics seem to be doing their job since the tenderness has gone away. But, we can't tell for certain about the redness because he has a dressing over the incision. The good news is, infectious disease will be switching his antibiotics over to oral and the Picc line will come out tomorrow. We will hopefully be moving out again on Friday.

Granton showed some more great improvements today. He is cruising better and crawled forward again this afternoon. Also, he took some milk through a bottle, as well as, water. He wasn't accustomed to the taste of the formula at first. But, now we know he will drink it and this will move us toward bolus feeds quicker. Lots to be thankful for with Mr. Granton. Most of all that we get to celebrate with him tomorrow.

Thanks for posting Denise! Oh, how precious. I bet Darbie doesn't let go of her very much! Can't wait to hear she found her mom's eyes. I'm jealous because carrying your car seat around will be a lot lighter! I bet you'll be home soon, huh? We'll try to get down as soon as we can...maybe next weekend.

Love you and Congratulations,

Daniel, Jenni & Granton