Rachel

Granton has a new baby cousin born today!!Her name is Rachel Lee Hardin. She wieghed six pounds eleven ounces.

Granton finally decided he wanted to turn one year old Thursday and be a big boy. He is babbling more and drinking from a cup with a straw. And, the most exciting thing is that he crawled forward today instead of backward and reached for a toy about two feet in front of him! This is a lot further than PT advises to place the toys. Also, he made me laugh out loud today when he was rocking out in a pink teapot/flower exersaucer from child life. He was listening to Lost Highway by Bon Jovi. It was so funny because he can't quite jump as high as his jumparoo allows, but he was groovin' all over the place. I really wish I had that on film. The nurse thought it was hilarious, too. Our new room is more spacious which is nice. But, I don't think we'll be here for long according to the doctors on rounds this morning. The biopsy, so far, only shows fatty tissues and no lymphnodes. However, the puss/fluid the surgeon got out should be able to tell us what the infection is or if the current antibiotics are doing their job. If they are the cultures won't grow anything. That's all for now.

Jenni

Post-Surgery

The surgeon said everything went well. He took out some fluid/puss and lymph node tissue for tests. He also used permanent stitches instead of disolvable ones to help prevent infection. He has a dressing on until next week when the stitches can come out. He said that the area was easy to access and not far up into his jaw line where other lymph nodes are. We pray, especially, for no infection of the wound resulting from the procedure itself. He is currently recovering and should wake up shortly.

Jenni

Granton just went into surgery. He will take a couple samples of lymph nodes out for testing and then they will be diagnosed for proper treatment. we should know what the infection is by wednesday.

Jenni

Granton has been a happy boy the past couple days! He took a bottle last night, as well as his syringe! He drank about 4 oz. out of the bottle. We were both pleased to see this! He weighs 7.475 (16 lbs. 4 0z.) today which means he gained weight! And, his surgery is scheduled for the afternoon around 2 or 3 unless we hear otherwise. I am waiting on a doctor to come confirm that he still wants to go through with the procedure. We would like to feed him if we don't have to have surgery. As of now he can't have food all day... and we know the operating room is never available when they say, so that is probably not an exageration. I'll let you know more later.

Jenni

Granton seemed to be in a good mood last night. Aunt Denise came up with her lap top so we are able to post a picture. We don't have much news other than they are going to cut his feeds tonight so they can do a little surgery for the lump on his neck tomorrow. However, the lump seems to be getting better. They may decide to see if it goes away on it's own without surgery. Please pray that we do the right thing. We will keep posting as things happen.

Together again

It sure is nice to have our family back together again. I think Granton looks pretty good. I have not ever seen this lump on his neck but they tell me has shrunk. This is probably from the antibiotics. The little guy has put on some more weight also. He tipped the scales at 7.425 today. This is a pretty big jump for him. I have also noticed he has a few more sounds in his babbling. I just finished holding him and feeding him some sweet peas. I thought he ate pretty well. I really want to put a new picture of the little man on the blog but we are using a different computer which does not have a slot to put the SD card in. We will be looking for a way to get his picture out soon. I just want everyone to know the little guy seems to be doing all right. We don’t know for sure but he may have his birthday party in the hospital. We are just so thankful we get to have a birthday party. Thank you for praying for us; it means so much.

Doctor's Report

Granton is in the hospital for three reasons. The first is the swollen spot on his neck that is a little red and tender to touch. The ultra sound didn't reveal anything specific so he will have a catscan done today at 4:00 to get a clearer picture. The doctors think, so far, that the spot is either swollen or infected lymph nodes. They will also scan the rest of his body to look at more lymph nodes. The second reason is the mucus/bloody stools he was having earlier this week. I didn't notice any blood yesterday or today because his feeds were at 37ml/hr and the amount of stools decreased. The third reason is his weight. The doctor wants to give him TPN (iv fluids) to help his weight gain over the next week. He did gain weight today--7.165. Also, he will be receiving a picc line, despite the infection risk, at the same time he has a catscan. They are doing this because of the number of pricks he will be receiving, plus to help the TPN get through him without making a periferal line go bad. The doctor that saw him today hadn't seen him in a few weeks and noticed how thin Granton looked and that he wasn't feeling well. He will be in the hospital for at least a week because the antibiotics he will receive could cause more diahrea again, plus they would like to see him gain weight. One more thing to pray about--a biopsy may be done on his neck if needed. The catscan will give more details and this will probably not be necessary. But, an order has been put in just in case.

Jenni

Home is where the heart is? :-)

I talked with Jenni this morning. She is so strong. She wanted me to pass this on to everyone. First of all, Granton is happy. He is back in his old room and bed. Jenni thinks he feels more at home in his hospital bed than the Mac house. I plan on having a strong discussion with him this weekend about where he is supposed to feel more at home:-) I may tell the nurses to stop being so nice to him so he won’t enjoy the hospital so much. Anyway, she said he is giggling and watching playhouse Disney. The little guy is going to be ticked when he comes home to find out we don’t have cable. Jenni’s spirits are great. I am sure this because Granton seems happy. I can tell you his dad misses his family. Granton may have a cat scan today to see what the red swollen area under his ear is all about. I don’t know much other than that. Jenni did say Granton seems to be eating a little more. People are always asking me what we need. The answer is simple: Prayer. We find so much comfort knowing so many people are praying for the little guy. Please don’t stop.

Mimi Relay 9/25

Granton is being admitted back into Childrens Mercy, due to his continued loss of weight and a lump on his neck. The lump has actually been there for quite a while. It may be a swollen gland,they are checking it out. They are wanting to get him started on an IV. He will be back on the 4th floor like he was befor but we don't know which room. Updats will follow.
Love and Prayers,
Mimi

The appointment has been good, so far. The doctor was pleased with Granton's lab results and his liver enzyme count went down which is a praise. His weight went down, however, to 7.08 which is 15 lbs. 6 oz. Granton seems to be stretching out and measures 28.5 inches long, though. We will experiment with bolus feeds to see if this helps decrease his diahrea. Just trying something different, but if it doesn't work we'll go back to slow continuous. Thanks for praying. He slept through the night and seems better today.

Jenni

Just a brief update. Granton has been really clingy and winey lately. I am concerned that he has lost weight this time and we will see the doctor again tomorrow. Please pray that if any change can be made to Granton's feeds or medicine that the Lord will provide the wisdom. I have had to limit his feeds because of increased diahrea. And, to encourage Daniel a bit...this too shall pass.

Jenni

Mimi Relay 9/23

I just talked to Jenni, and she asked if I would give an update that she missed after the Monday Dr. appointment. Granton was taken off the bloodpressure medicine, and his bloodpressure is doing fine. Every baby step in the right direction is great.
She said Granton is feeling pretty good. The diahreah is still a big problem. It is hard to gain weight and have 8 dirty diapers a day.
Love and Prayers,
Mimi

Thankfulness

We have not received the spirit of the world but the Spirit that is from God, so that we may understand the things freely given us by God. I Corinthians 2:12

This verse stood out to me as I was browsing in my bible during church last Sunday. I was looking for something else but when I came to these words I kept reading them over and over. Later on in the sermon, the pastor was talking about being thankful for everything. He talked about how we are all thankful for our family, job, home… BIG DEAL who isn’t is basically what he was saying. He brought up Job and talked about his bad day when he lost all his children and monetary possessions. Right after that he lost his own health and the support of his wife. Job asked this question “Shall we accept good from God and not trouble?” The pastor pointed out that Job was thankful to God in everything. Then he asked us if we were thankful for everything. One of his questions was “Have you ever been thankful for cancer?” BAM! That hit me. I always thank God in my prayers. I normally thank him for Jenni, Granton still being alive, job, food and many other blessing. I have been thankful for many things but I have not been thankful for everything. I had never been thankful for SCIDs. My next thought was how can I possibly be thankful for SCIDs! This is where I Corinthians 2:12 comes into play. I must fight the spirit of the world and welcome the spirit from God. This is the only way understand so many of the things God has given us.

2nd Corinthians says 10:3 says, “For though we walk in the flesh, we do not war after the flesh.” Jenni and I read this verse to Granton all the time. When I think outside of the flesh, I think about the betterment of the Kingdom of God. We have had so many people share with us how Granton’s story has changed their prayer life, or increased their faith. We have even had a few people share with us that this blog has in some way had a part in leading people to salvation. I want to thank all of you who have shared these things. You have helped me think outside the flesh and understand the things freely given by God. I am amazed at how God has used my little boy to benefit his kingdom. After considering this I have actually been able to sincerely thank God for SCIDs.

Thanks again for sharing and please keep praying for the little man.

Great Job, Daniel! That can take a long time to download when you're a busy guy with homecoming week. We hope you have a fun time with the float. Let us know how it comes along. And, pray that Granton's liver count goes down. It is probably up because of meds or a post-virus. The worst possibility is graft vs. host in the liver, but we don't want you to worry about that because doctor D said this isn't likely. He just wanted to give all the senarios and said that they will be watching him closely and, of course, changing around his meds. Love you.

Jenni

Bouncing Baby

Six moths ago today we started this adventure, look how far the Lord has brought this baby boy.

Goodmorning. Granton was weighed on the lighter scale today so his weight was about the same--7.295 to 7.29. I told the nurse we switched to weighing on the other scales since she wasn't here last time, but we will have to start being consistant next time. I think she is too busy today. I will let them know ahead of time Thursday to have the right scale ready. Also, Granton will need at least another week tolerating 40ml/hr before the doctor decides to try bolus feeds. Hopefully, he will eat more table food during bolus feeds...feeds with an hour and a half break instead of continuous. His stools have decreased which is nice and he should have less diahrea after we get through the continuous feeds. Also, I'll remind you again later, but anyone who will have regular contact with Granton--mom, dad, grandparents, aunts, uncles, etc.--will need to have an influenza vaccine. And, I found out that Granton will be able to have a medicine he received in the PICU for RSV starting in early November or the beginning of RSV season. I am thankful for that extra help to avoid RSV. It will be given for 5 or 6 months. He got all his labs drawn with one stick today and a second for his ivig with no problems! He is napping in his stroller while we wait for lab results. Oh, and since he's here for labs on his birthday next week he gets a special cake...more parties. :)

Jenni

I just thought I would share with everyone that I had a great time with with Jenni and Granton. We put his mask on him and took him on a walk Saturday. It is fun because he has been cooped up for so long. He just sits back and soaks everything up. The little guy has a checkup tomorrow. Keep praying we need the little guy to gain weight without setbacks. I was going to post a video of him tonight but I had some technical difficulties. I will try again. Thanks you all so much.

Granton's 100 day celebration was quite a surprise. The bone marrow team came in with a balloon that Granton has played with for two days and presents to unwrap. One of the doctors taped us while we unwrapped everything. Daniel said he would take our chip home and see if he could download some videos and pictures for you. Also, the team celebrated no RSV officially and Granton got to see their faces smiling at him for the first time! It was great to see everyone cheer him on and care so much about our little boy when they see thousands of patients. So, two very specific prayers answered praise the Lord! And, like Daniel said we should be weaning the tacro in about 20 days which means all the other meds will be weaned as well since his levels usually show up low due to the immune suppressent drug. Well I got to run so I can meet a guest at the door. Talk later.

Jenni

98 99 100 101...

Granton is doing just fine. He gained 1/5th a lb from Monday to Thursday. Jenni was going to post a blog but she spent most the day running all over Kansas City trying to get Granton’s formula because of a paperwork problem. Yesterday was day 100 for Granton. That means he had his transplant 100 days ago. The doctors gave him a party and told Jenni they officially consider him to have a new immune system now. We were hoping to go home on that day but it looks like it might still be awhile. However, it won’t be long and the doctors will start pulling back the FK506, which is an immune suppressant. When they pull it back, then they will be able to wean other drugs also. I would like to write more but Jenni said she wanted to write the blog when I get to the Mac house and can watch the boy. I don’t know what she will want to say so I better cut this off. Just keep praying for this boy. Our family misses each other and can’t wait until we are all back home in Bolivar.

A big thanks to Daniel for keeping you posted while I was out. Granton is making me feel better and better each day. For starters, on Monday the doctors tested his stool for an infection again and the test was negative. So, between Saturday and Monday his little body had fought off the infection causing diarhea and we didn't have to give him his antibiotic! The amount of dirty diapers is slowing down and his appetite is picking up. Everytime I eat he wants to eat too...my food. Well, the past three meals he has chowed down on green beans, grilled cheese and this morning he ate bacon, pancakes, eggs and cheerios. This makes him very happy. We will start to push him an hour or so during the day on his feeds, as well. He looks less pruny and more hydrated, but we're needing to get those skinny limbs fattened up. The pump works just fine now. Actually, the charger was bad and so we were able to find a new one right before bed. Sure don't want to lose any ground, so that was a big praise that the Lord worked it out. I had gone to Granton's appointment without the charger on Monday and needed to borrow one while we were waiting. When his pump wouldn't charge last night I went back to the hospital and found the same charger that we had borrowed to replace our original that is not working. Just another reminder of the small things that the Lord takes care of. We are grateful that Granton didn't have to wait for a whole day or night just to track one down. Also, he is adjusting great to his new home. We have taken a couple walks and watched some butterflies and fountains. And, he has slept through the night for 3 nights in a row...5:00 is a little early for me but I'll take it compared to every hour. One more thing, I might have mentioned him before, but we have a friend here with a baby named Owen if you can say a prayer for him. He's been going through ups and downs and has a heart test today. Thanks.

Jenni

Pump problems

Jenni had a bit of a crazy day yesterday. Granton’s pump that feeds him through his tube broke. She was going to write a blog but didn’t get to because she was busy trying to get the pump fixed. He had a good day and did not seem to care nearly as much as his mother about the pump. Jenni will try to write a blog today and give everyone a better update. Just keep praying for the little guy.

Daniel

Granton’s checkup went fine. He kept his weight. The doctor found evidence of an infection in his stool that is common for a transplant patient with an immune deficiency who have to take all the drugs he takes. We are going to get some medicine that should help. He also slept better and was only awake between 4 and 5 o’clock. This is a positive change for Jenni. Granton will not have another checkup until Thursday. I think it is a good sign that they did not feel they needed to see him for a few days. Granton made me feel so good when I left yesterday. He waved bye bye, which he has been doing for a while, but he also blew me kisses. That’s a first. It was a wonderful end to a great weekend. Thanks for the prayers.

Daniel

Great Weekend

I am happy to get to share a blog. Jenni and I are having a hard time getting to a computer but we will try to keep posting messages. We know it is very important to share with everyone how they can pray for Granton. Our main prayer focus right now is Granton’s weight. The stomach flue he got a few weeks ago tripped the little guy up. He is very thin but we are working on that. Please keep praying. We need him to keep his food down and digest more before it goes out the other end. He is doing better. I have watched him improve this weekend. He seemed happier last night than I have seen him in a long time. We have a wonderful video of him going crazy with smiles and jumps in his jumperoo. I have not found a way to post it on this computer. We will post it as soon as we get a chance. He had a very quick checkup at the hospital today. The doctor said he looked better and his stomach sounded much better. She was also happy to see more moisture in his mouth. We were very pleased by this. We have been a little concerned they may want to readmit him but I think he may have turned the corner. He has been so much fun today. It is wonderful to have the happy Granton back. We have really enjoyed life in the Mac House with the boy. It has kind of been like a weekend for a normal family. Personally, I have felt much better after a talk with the Lord and some time with my son. I know he is very thin and needs some meat on his bones but I think he feels better. At least he is not pooping every fifteen minutes. We sit and played for an hour this morning and let Jenni sleep in. She needed it and I loved it. I really miss them during the week. Speaking of missing them, I think I will head back up to our room. Thanks again for all the prayers.

9/13 Relay

This is Mimi again with another message from Daniel and Jenni.
Daniel and Jenni and Granton are all at RM house, enjoying some special time together. They all 3 went over to the hospital this morning for a check up. Granton and Jenni had a ruff night last night but Jenni thinks Granton is feeling some better today. He went 4 hrs. without a dirty diaper this morning which was a big encouragement to the Drs and to the family too. Granton had also gained a little weight , which is good news. The Drs. say there is nothing they can do for the diareha so that is still a big prayer request. Granton has another appointment at the hospital tomorrow. Untill then the three of them will enjoy much needed together time.
Thanks for the prayers. God is still working!
Mimi

Relay message

Hi folks, this is Mimi.
As you know Jenni is having trouble getting access to a computer, so I am giving a message and prayer request relay style.
Granton is having trouble with his weight. He has a pretty severe case of diahreah. He had a 4 hr. Dr. appointment back at the hospital , and actually lost weight while he was there. The Dr.s are keeping a close watch on him, but he just dosen't have any extra weight to lose. Please Pray. We want him to get well and strong, not have to go back to the hospital! The battle isn't over just because we won a big battle. Pray without ceasing.
Love and Prayers
Mimi

Video and More Pictures

Pictures

What a Ride!

Do you want to see a miracle boy in a wagon with his boots on? Then, tonight you need to go to http://www.kansascity.com/ and see the photo gallery they posted of Granton. You might even see an interview, but I'm not sure what's up yet because I haven't been there--first things first. Granton will have an appointment tomorrow morning and during that time while we are waiting for lab results I will post our personal photos. Then, I will have wireless access and the ability to use my sd card. As for the day, everything ran smooth and we are officially moved in and extatic to be here. The suite feels more comfortable with Granton here. He watched "the wheel" with me tonight while I ate dinner and he ate his cracker. He's been wide-eyed all day trying to figure everything out. I wanted to share a few highlights from the wagon ride that we waited so patiently for.

First, we were greeted by the bone marrow transplant team with claps and cheers as we wheeled out of our room. When we moved on down the hall more nurses joined in our excitment and all the while Granton was being captured on camera by the KC Star. Then, we reached the ground floor where I wheeled Granton underneath the dome of stars where Daniel would say, "Jesus Save Granton," every time he passed by. On the ground below the dome is a large star design with a circle in the middle. If you stand in the center circle and talk, your voice echoes loudly even though the person standing outside the circle will hear your normal speaking voice. Daniel, and the grandpas have all come up with their own words to say to cheer Granton on to the finish line. We feel like we've made a major milestone finishing our stay at the hospital when there was a time we wouldn't have been able to see that far. But, one day at a time has finally led us to a home away from home and we are happy to be living out that moment. Finally, the next highlight came when Granton got to see the great outdoors for the first time in 6 months! I captured that on a short video which I plan to show tomorrow if it will download. He watched the rain just outside the hospital doors under the awning with some flowers and other landscape in front of his view as we waited for Aunt Darbie to take him to the Ronnie Mac House--cowboy boots and all!

We hope you get to see some great pictures of Granton through the newspaper this evening and we're sorry for our delay. Daniel had mentioned that I would be going back to the hospital to give you the update, but between moving and becoming Granton's new nurse I didn't quite make it. For the first time I'm not frustrated when I hear myself say, "It's 9:00 p.m. and visiting hours are over at the hospital!" I definitely enjoy walking down the halls knowing that I don't have to live there anymore and hopefully never again.

Love,
Jenni

Stay tuned!

I just got of the phone with Jenni a little while ago. Granton did move and is enjoying his new “home” very much. Jenni will post more later but the Ronny Mac House does not have wireless access. Jenni will go back over to the PICU in the hospital and post a blog and pictures. We are having a great day and we would love to share what the Lord has done for us with you. I don’t want to say anymore because I may be in the doghouse if I steal any of my wife’s thunder.

Daniel

Bone Marrow News

Well, today's our big moving day and we are sooo excited and I think our nurses are, too. Granton has been a happy boy this morning sitting up playing. We don't have his outfit on yet because we want it to be clean for this afternoon. When he wakes up I'll get him ready and start taking pictures. So, look for another blog later.

I wanted to share a few more exciting things that we learned this week, as well. You might have read the comment already that said a man who went to one of Granton's bone marrow drives has been called upon to do further testing as a possible bone marrow donor. Also, Aunt Darbie, who's been helping us out all this week, has a friend named Cheyenne who went to the drive in Dearing, KS near Daniel's hometown and has tested positive as a perfect match for a 55 year old women with luekemia! I have been sooo thrilled to hear this news that Granton's bone marrow drives are helping to save lives...maybe two so far. I would hope that the chain of events will eventually save many with more donor awareness. It feels good to make a difference even if it is indirectly. We look forward to updating you later.

Jenni

Granton is full to the brim at 35ml/hr. He doesn't wine or fuss he just cuddles and sleeps. Daniel thought he might have been bored, too. When music therapy came that confirmed his theory for sure. So, between being full and bored we don't have a lot of spunk going on right now. But, that will soon change we hope. Tomorrow is our discharge party day! Yes, the doctors want us out of here so the plan is to leave by tomorrow afternoon. I've been busy loading down a wagon full of our junk. Hopefully, you'll see pictures of Granton in that wagon on our next post. :) We will either walk over to Ronnie Mac with a stroller or use Aunt Darbie's car if it's raining. The newspaper will be here to see us off and Granton will be decked out in his cowboy boots. I already had him try on his outfit last weekend, but I was told not to show anyone yet. He looked real cute. We are excited to see what tomorrow brings. Also, we will be planning a first birthday party soon at Ronnie Mac. We won't be home for the celebration, but we will be home away from home and out of the hospital. Thanks for your prayers...everyday.

Jenni

P.S.--One more thing, Granton has his foot back with no iv keeping him from standing on both feet. He is an iv-nose tube-nasal canula-tape-free little man!

Good morning! Grant slept well last night. He woke up this morning with a smile and was so playful. He is back to his old self again. His new feeding tube is working well and looks great. His feedings are up to 30ml/hr, he will be increased to 35ml/hr at 1pm today and this will be as fast as it will run. He only has to take one medication by mouth, the rest are now put in his feeding tube (this is alright because he likes the taste of that one). For myself its so nice to have time to play and love on little Granton, he is so happy! Jenni is doing such a good job, she is here about the time he wakes up and stays until he is asleep at night. Well that's all I have to say...were just hanging out today.

Aunt Darbie

Goodmorning. Granton is a happy boy today, praise the Lord! He stood up for Aunt Darbie this morning begging to be held. I was surprised thinking that he might still be a little too sore for that. He is still layed back this morning, but definitely not in any pain while he sits in our lap.He is sitting up comfortably in a recliner with pillows right now. I am also happy to say that he ate at least 2 oz. of cereal this morning while taking his meds by mouth. Between the cereal and meds he probably had equivalent to a baby food jar full of food in his stomach. He was hungry in the night, too, but we were not allowed to feed him then. He received two doses of pain meds in the night, as well. Part of the time we thought he might of been in pain and part of the time he probably was just hungry. But, of course he can't talk so we didn't know exactly. Today, we can give him a pain med called oxycodon that isn't as aggressive as the fentanyl that he got last night. And, he isn't requiring any oxygen--stating at 100! We are confident that he will bounce right back after this surgery and as soon as the doctors put in the order we will be able to make progress gaining weight. I am pleased to see that he hasn't lost much ground in that area, I guess because they are still giving him nutrition through his iv. He weighed 7.7 this morning (round up to 17 lbs.) before he had his medicine and cereal. Two days ago he topped out at 7.78. Hope I got all the questions answered. Talk to you later.

Jenni

Granton had the surgery last night. He is now off the vent and only requiring one half a liter of oxygen. The doctors think it went well and I don’t know much more than that. Thanks for praying.

Please keep praying for Jenni and Granton. I just got of the phone with her and bunch of emergence surgeries have been done today. This means Granton keeps getting bumped back. He has not been allowed to eat since last night. He is very hungry and upset. This is hard on his mother and they both need prayer. Thank the Lord for sending Aunt Darbie to help out. We really appreciate her. We will try to post when he has the surgery; hopefully that won’t be much longer.

Daniel

They got an iv working in Granton's foot yesterday and it hasn't bothered him. He gained weight again--7.780 which is back up to 17 lbs. :) He had a real good night and slept through it. He went back to sleep after vitals both times. We are praying for his surgery today. His feeds went off at midnight so he can be sedated. Daniel and I especially need comfort when we stop to think about a hole put into his tummy. We know God is in control as always. We're thankful for how far He's brought Granton and that He won't let us down.

Jenni

Since yesterday a lot has happened to fill you in on. Sometime Saturday afternoon his milk line got caught in the chair--as it often does--and out came the nj tube. We got it put back in place with no problems and no puking! Then, came the night. About 2:30 in the morning Granton started screaming out in pain. He would try to go back to sleep and then wake up again crying. My mom and the nurses tried all they could to console him and even gave him some pain meds. Thinking that Granton was having more stomach problems like before, his arm went unnoticed until about 7:00 a.m. The site where his iv was located was blown up like a balloon and still looks very swollen now. As soon as the nurses cut the tape to relieve the pressure Granton let out a big sigh and went to sleep. Since then, several nurses have attempted to start another iv on him and can't get the difficult task done. After a vein is used they usually wait a week before using the same site again. He's had to be stuck at least four days this past week and will have his standard twice a week labs in the future. Tomorrow, he will be getting a g-tube so pray that surgery will go smooth and that we can get an iv running until then. We are slowly giving him more fluids through his feeds, but we don't want to push it too fast or he won't keep them down. The vein issue seems to be getting more and more complicated and of course we don't enjoy having to hold him down and hear him cry everytime, either. He has just gone to anesthesiology so we pray that they can get an iv running again.

Jenni

Two down and one to go!

Well they still haven’t done rounds so I will make a post anyway. Usually they come in right after I put something on the blog. Granton is doing well. Right now he is sitting on his Aunt Shanna’s lap eating a cracker. He loves Crackers, cheese, (but cheese gives him the runs) apples, and scrambled eggs. He about bit me trying to chomp up the eggs. He is also learning to drink through a straw. Granton did gain a little weight again today and he seems to be handling his new NJ tube well. He is getting more vocal. He talks to me by saying Baaaaaaa! I will baaaaaaa back and we keep it up for quite awhile. He is still a very little guy but I think he looks better than he did last week. The last bit of news is we now have two final negative tests for RSV. They have taken one more culture and if it comes back negative I am pretty sure we will not be in isolation any more. Praise the Lord and keep praying for the little guy.

Counting Calories

Today has been a good day so far and Granton is happy and playful. Right now he is bouncing in his exersaucer and watching baby enstein. We already ate breakfast, took a nap, ate lunch, played in the crib while listening to music, and read two books. Now, we are waiting to go to radiology to have an nj tube placed in his intestine--slightly further than the ng that goes to his stomach. We passed this up two days ago to try to meet all his needs by mouth. As you know, Granton does things in his own time at his own pace. So, we are making the best decision to put in the nj tube based on the past two days. With the iv fluids and oral feeds combined, we managed to consistantly give him about 2/3 the amount of calories he needs in one day. Ideally, he needs approximately 800-1000 and we put in about 7oo each day. On average, only 400 calories were from food that he would eat orally. We were very close, but most of the calories he consumed did not come from the formula with the added vitamins and nutrients he needs. If he tolerates the nj tube then we can put in a g-tube--the second belly button--which we have ordered for next week. Granton is being maintained by iv fluids and whatever we give him orally until he receives the nj tube. By noon today he ate 85 calories and drank very few of them which is an issue. He will still receive the iv fluids through the weekend as we push his feeds very slow. His weight did not decrease today which is positive, but it did not show any increase either. He weighed 7.51 yesterday afternoon and 7.515 this morning. We've sure learned a lot this week about different foods and the calories they have. I am thankful for everyone helping us through this nutrition adventure.

Jenni

Yes, that's cookie on my face that my mom's been feeding me. She says my milk will taste better if I have a little oreo to go with it. Today has been a good day. I practiced pointing at my cheese and picking it up with my pincher grip. Then, this afternoon Mom swaddled me like she used to when I was a newborn. I gazed at her through my blanket and she bounced and held me for quite awhile. It felt like old times again. The nurse says I'm spoiled, but I know my mom likes to stare at me so I let her. I have been so happy today and can't wait to see my dad tomorrow. Have a nice night.

Love,
Granton

We are gaining weight slowly but surely. Granton has had the opportunity to eat by mouth again today since he couldn't hold anything down the ng tube. We think it was rubbing his throat and gagging him when we would try to give him meds through it. So, he ended up sleeping through the night without an ng tube and without any throwing up. Today, he's been eating slices of cheese, yogurt, cereal, peaches, progestamil (formula), medicine and enfalyte. He has taken these all by mouth in small amounts and has kept them down which is a praise. I am still concerned that he is not getting enough nutrition because he only intakes about half the amount of calories that he needs per day. The doctor has given Granton some extra help through his iv to give him the nutrition he needs until we can get a g-tube put in. I actually made the suggestion to put in a g-tube with the idea that Granton would not gag, choke or throw up because of a tube going down his throat. He also eats better when he doesn't have a tube down his throat. Also, that gives us some time to keep working with him on eating orally. Wouldn't it be marvelous if another miracle was in store for the weekend and Granton would suddenly start to eat more by mouth? Practically speaking, I believe the g-tube is needed to get him back within his weight range and like I mentioned yesterday, I don't see any bacteria infection risk as we had thought before. Spiritually speaking, we will need many prayers and God's intervention to get Granton to eat up to speed in three days and avoid getting a g-tube. I am encouraging Granton for all his progress and/or any interest he shows in taking a sippy cup or eating. However, I am not convinced that Granton can pack on the pounds this way for right now because this is a very slow process and we don't want to force feed him. So, all that said we continue to pray for what's best for Granton. I have often been corrected in the past and I certainly hope that's the case this time, but my nature is to be as honest as I can and tell you what I see. Also, we are praising the Lord that the infectious disease doctors approved that Granton could get rid of the bactrum antibiotic that has probably been giving him very loose stools. Time will tell on that. To wrap things up, we will be here in the hospital for as long as it takes to get Granton to gain a tolerable weight and the g-tube will only be temporary to get to that point. I am not in my anxious hurry to leave as I was before. I know that the set back will take some patience to work through. Here is a very encouraging verse that spoke to me this morning: We must believe that God exists and that he rewards those who earnestly seek him. Hebrews. I have no doubt that the Lord will work everything out according to His ways and His time and I accept those ways even when they don't match mine.

Jenni

After a days diet of yobaby and enfalyte Granton did manage to keep the food in his stomach and gain a little weight. We are still going to try again to start the ng feeds since this method is more ideal for gaining weight faster. I pray that Granton will be able to tolerate the continuous feeds and not throw them up. The nurse will help us by going really slow on the volume working up to 35ml with a more dense higher calorie formula. I believe that he will hold them down if we go gradually and slowly as we did over the weekend and not fill him up too fast. If not, we may have to try the nj tube that goes to the intestine instead of the stomach. If that doesn't work we can try a g-tube. The g-tube is less infection risk because it is directly connected to the gut and not the blood stream. So, that is good to know. We will try to avoid giving him nutrients and calories through the iv since it can't be depended upon to work for very long or trusted to keep Granton from getting a bacteria infection. However, the nutritionist are very concerned that they will have to resort to this if Granton keeps losing weight. He is not near to the level he should be because of the big virus set-back. Also, we know that the antibiotic bactrum might be causing the nausea and this afternoon we found out that he only has to receive this med 5x per week instead of 7 which might help some. This is what we are learning and praying for--mainly no puking so that we can move on to gaining weight. Hope you are all doing well. We appreciate everything.

Jenni

It's a drippy day in KC this morning. I am wearing jeans and a jacket and the heat was on when I entered the building. Feels like fall. Well, Granton was awake all night throwing up his feeds. This morning since 9:00 he's had one small puke. He is super sensitive to his ng today. Even 1/2 an ml of med or just testing for placement upset his stomach. We have been pushing his meds very slow. He has one more left to take and we've been taking them over a two hour span. He has taken pedilyte by suringe and of course the meds and hasn't thrown up. We are thankful he is taking something by mouth, too. Vascular access got an iv placed on their first try and I barely heard a fuss from Granton, so I'm thankful he's learning to deal with being stuck. He will be getting iv fluids soon. Also, a little blood showed up in his stool this morning. We are praying that his stomach will regulate itself again. We are praying for the Lord to show us and the nutritionists the best way to help Granton gain weight. I happened to find some yobaby yogurt that is basically organic whole milk and tastes something like sour cream. It has 90 cal which we like, too. He loved it and hasn't thrown it up yet. He did not tolerate the pediasure--it came up faster than we could put it in...I'm beginning to wonder if formula has anything to do with the situation, but we'll keep learning and praying. As long as we can get oz an hour we can continue to feed by mouth. I don't object to the ng as long as he doesn't throw up, so if we start that we'll go real slow.

Prayer Request

We are so fortunate to have gotten all the great news lately that Daniel posted yesterday. Time really got away from me today seeing that I ate lunch at 3:00 and I'm just now posting a blog at 4:30. I hope everyone had a great holiday weekend. I enjoyed my time with Daniel and Granton, just the three of us. Not much has changed since the last post. We went up on Granton's feeds to 45ml/hr and he has tolerated it just fine. Our prayer request is this: in order to be dismissed from the hospital Granton must gain weight and not throw up his feeds. He actually went down in weight this morning, but hopefully, the increase in feeds will boost the weight back up tomorrow. I got to replace his ng tube for the first time today and he handled it great! He usually cries a lot and hates it, but he calmed right down afterwards. It's nice to be practicing the procedures for parent care status.

Getting Closer,
Jenni

Thanks for answered, unanswered and postponed

Granton lost weight yesterday but he increased this morning. His latest IV gave out but the good news is the doctor did not think we needed a new one because he is off IV fluids and he does not have any meds that go directly into his bloodstream. This morning his doctor from the infectious disease department visited us. She told us they have officially dismissed the PCP, which is news to us, and were happy for the negative result on RSV. She also mentioned one or two other things they think Granton has gotten over, but PCP and RSV is what I focused on. I couldn’t even begin to guess how many times I prayed and asked everyone to pray for PCP and RSV to be gone. Ironically, if Granton did not have the positive test result in late May for RSV we would have gone with our original plan for the bone marrow transplant. That means we would have started chemo after he got off a ventilator. He was taken off the vent on July 4th but a few doctors said he may not have ever been taken off it without the immune system from the transplant. Never the less, if we started chemo for bone marrow in the middle of July he would not have attempted a transplant until the middle of August. That means we would be on about post transplant day 15. However, God had a better plan. The RSV made us take a different course of action and we are on post transplant day 83! Thank God for answered, unanswered and postponed answered prayers. Wow, I got way of track. I was talking about the infectious disease doctor. She told us they have officially finished with Granton because they have nothing left to do for him. I think that is pretty big news because they have been working hard for Granton since March. We all smiled and joked about never wanting to see each other again. We were laughing and they are great people, but it is true that I never want to see them again. After they left Jenni and I talked abut the PCP and RSV and we have noticed for the past few weeks that Granton has finally stopped his coughing for all practical purposes. The doctor on rounds did not change much. They are going to start giving Granton a drug called bactrim which they hope will prevent any more bacteria infections. Well that is all for now. Keep praying for the little guy and his mom too. She has lived with Granton in the hospital since March. That is a long time for a person who used to get homesick on vacations. She has done so well and has been very strong but I know she misses her hometown. It will be great for all us to be back home. Wow, I look forward to writing that blog!