11!

Well I just got an e-mail from Jenni in KC and Granton's new hgb count is now 11. This is a new record and his weight is about 22.5 lbs! We are very excited. I will let you know more when I get the info. Jenni and Granton left about 6:30 this morning for the hospital. He was sleepy but still waved by by and gave me a sleepy smile as his mom put him in the car. It was sweet. The post by Dr. Whitlock and Grandma was really cool. I love teaching and coaching those kids even if they were Sooner fans. I guess this proves nobody is perfect. Thanks for all the prayers and keep it up. One of these days we wont have to make trips to the hospital any more. God Bless

Wild man on "roids"

I have some very good news. Granton’s number was way up. The new number is 10.4. This is the highest we have ever seen for him. It was so good that they let him come home last night. We were prepared for him to stay in Kansas City all week, but he got to come home and they even lowered his steroids. He has been feeling so good lately. He is truly a wild man. He eats so much we think he is turning into a bottomless pit. He likes to grunt and flex all the time. He has started yelling, as if he is commanding an army, to any one he sees. All this sounds like how a person on roids would act however, he has also started doing his own dance to the “Hot Dog” song on Mickey Mouse Clubhouse and I am not too proud to admit it looks a little feminine. So I guess he is just loving life, we all are. We try to thank God everyday for our many blessings. Thank you all for your prayers. We have had a great couple of days and we just wanted to share how good we feel with the little wild man.

Long term and short term

This is just a short update, but I just got off the phone with Jenni and the G man’s number was up to 9. This means he gets to come home for the weekend. He did have a small fever and a red face this morning which they think is a side effect of the new drugs he is getting. Jenni said he is eating like a horse and bouncing off the walls. I guess this kid likes his steroids. I don’t know if we reported it or not but he has gained a lot of weight. He is over 22 lbs now. Anyway, for the short term, this is a good report. As we have all learned this road is full of ups and downs and we try to take it all in stride. I think longer term plan will be for Granton to have 2 or 3 trips to KC for the next few months. Please pray for him and his mother who is very pregnant. We know the Lord will see us through.

I'll try to be brief. We are getting ivig today. Granton's first blood result showed his hgb level dropped to 6.3 and his platelet count was lower than usual. They drew a second lab "just in case" and found that his hgb went back up to 7.7 and his platelet count was back to normal. All in all his immune system will need some intervention at this point. As the doctor put it, we are jumping another hurdle and there is no getting around it. He said that Granton's immune system is like a pendulum that is swinging back to the opposite side now. He needed immuno suppressants (tacro) before to help it's function. Now he needs the suppressants because of his immune system's over-function. It keeps killing his red blood cells and the virus did not help the situation any. So, what does this mean for us exactly? We can only say time will tell. However, we will start out with steroids as a treatment which will probably take at least a month to wean. There are other options available including the tacro as before. This could actually take months to correct...another patient had a severe case that lasted for about 6 months. Anyway, the big change will be our increase in hospital visits (2-3 per week) again and possibly lengthening the time it will take to get Granton out in the real world again and not isolated from people and kids. We are still hopeful that the Lord will give us His grace and allow the situation to turn around before the baby comes.

Jenni

Look How Far We've Come!

We know that many of you have been following the blog closely and will recognize this video. This just makes us realize even more how blessed we are everyday to have come so far. God Bless.

Home for Valentines Day

Granton and Jenni got back about 11:00 last night. They gave him a double blood transfusion so he would not have to be in the hospital over Valentines Day. He has been in great sprits today. He will have his blood tested again on Monday. We are praying that his number will stay up and not keep drifting back down. We are so happy he gets to stay at home this weekend. His Aunt Neese is going to watch him while his Mom and Dad go out. He loves her and is so happy she is visiting. Thanks for praying for the little man.

I just got an e-mail from Jenni. Granton's count is back down. It is at 7.1 right now. They are going to give him a blood transfusion. I don't know if he will have to stay in the hospital or not. Of course we would appreciate your prayers for the little man. Thanks and I will try to update later.

Ironically, right after Granton arrived at home from the hospital he went and grabbed his stethoscope himself and wanted to play hospital.

Granton just wanted to wish everyone a Happy Valentine's Day!

HOME!!!

Daniel just called and wanted me to let everyone know that Graton and Jenni are home. He said that Graton went straight to his books when he got home and that he was very excited to be back with his toys. As excited as he was Daniel said it was not half as excited as he was to have his boy back home.
I don't have anyother news to share but we just wanted everyone to know they were home safe and happy.

Aunt Neese

Granton did have a cat scan and it went well. He slept through it just as planned. There wasn’t anything glairing on the scan that would make them want to keep Granton. Jenni is very hopeful that will be able to come home today. Granton has received a blood transfusion again from the original batch of blood and this count is up to 8.3. This is the highest it has been for a long time. He slept through the night again without any oxygen. I am very short on time today so I can’t post much more but I will let you know if they get to come home. Thanks so much for pray for us through everything.

Happy Birthday Grandma Vena!

Granton has been in a very good mood, and yes he did sleep sound through the night. I am hopeful to see his hemaglobin levels this morning. His virus Daniel mentioned is called metapnuemo. His stats have been reading 96-97 while he's awake and 93-94 while he's sleeping. This is great news and shows that he is getting rid of the virus and responding to the transfusion well! Yesterday, I was snapping my fingers to a commercial song and Granton was trying to figure it out with his little hands. When he couldn't get it he just tapped his hands to the fast beat on his chest. It was real cute and I was surprised at his rythm. Hope to be home soon. His face and eyes look brighter this morning I noticed.

Blessings to All,

Jenni & Granton

A lot going on

Actually a lot has happened since our last blog. First of all Granton had a good day. He is still making red blood cells. It looks like he is making them just as fast as his antibodies are destroying them. This is good because he is not falling behind. The doctors were able to determine from some tests what bug he has. It is some big long name that I can’t remember, but; the sickness resembles influenza in many ways. The doctors think his new immune system should be able to handle it. They also gave him another blood transfusion. They used the same batch of blood as before because it seemed to work well with his very complicated system. Jenni called me this morning in a great mood because he slept through the night without oxygen. This is a big step in coming home and believe me she is ready. Granton has been in great spirits but I am sure he misses his daddy. I am also sure he doesn’t miss his daddy half as much as his daddy misses him. However, all in all we are defiantly encouraged in his resent progress. Other than his improvement I do have an additional prayer request for today. Granton is scheduled to have a cat scan today. Normally he would have to be sedated and put in a ventilator for the scan because he has to stay very still. No one wants to put him on the vent so one of the doctors wants to try something else. He noticed how heavy Granton sleeps and he wants to do the scan during Granton’s nap. So Jenni has to keep Granton awake a little longer today to ensure he sleeps soundly through the scan. This will be great if it works. Please pray for Granton and this process. Jenni will need to keep him awake until the time for the scan and then Granton will have to fall asleep at the right time. It will be interesting to see how it works. Thanks for praying.

I am back home teaching but I am obviously on the phone a lot with Jenni. Last night her spirits were up. Granton was sleeping with out oxygen. This is a big improvement. Usually he needs the most help when he is asleep. Yesterday he basically went the whole day without oxygen while he was awake but he did need some while he napped. Granton had another x-ray yesterday and it did not show any new problems. I know they will do another blood test today. We are praying for a good RBC count. I will let you know more when I find out more. Thanks for lifting him up in prayer.

Granton's hemoglobin level went up from 6.1 to 7.5 after the blood transfusion. We are thankful his body seemed to accept the blood and his counts went up. Last night, however, he had to have a nasal canula taped to his face because he was requiring more oxygen (it's hard to see that tube on him). He seems to need more at night dipping down into the mid to low eighties...I even noticed 77 at one point. His cough gets worse at night, too. He sounds like he is trying to sneeze but can't and is real weazy. So far this morning he has needed constant blow by oxygen which means we hold the tube up to his face to keep his stats in the low ninties. He does not leave the canula on very well. We are preparing ourselves to stay for a little while and hoping he does not have pneumonia. I need lots of endurance, especially being in a hot room and pregnant, confined to a chair all day. Daniel did a great job holding him all night while Granton slept. We are thankful that he came in at the right time and pray that his sicknesses will resolve before baby Kaylynn joins us. That's all for now.

Jenni

Watching the G man

Jenni and I want to brag on Granton a little. He has been hooked to an IV all day and he has not been able to stretch his legs for two days. He had to sit still for over five hours for his blood transfusion. He did a great job. Then transfusion is complete and we have not seen any signs of the negative side effects the doctors were concerned about. Granton doesn't look as gray as he did before. We did get to take the IV out so he could stretch but we just found out that they will have to put a new one in tonight so we let him crawl all around in his bed as much as he wanted for a little while. We don't have much more news. Everyone is just watching him very closely. Jenni and are doing well. We have been able to spend a lot of time together with the G man and that is a nice. He likes to be with us. Other than that, we have just been praying a lot. Thanks for joining us.

Antibodies and red blood cells

I hope this works we are having computer problems in the Hospital. That's right Granton is back in the hospital. His RBC count keeps dropping it is down to 6.1 as of the last test. He is going to get a blood transfusion today. For many reasons past my comprehension a blood transfusion is kind of risky for Granton. This has something to do with his antibodies but I will not try to explain something I don't fully understand. I do know they think the antibody that is killing RBCs is more active when it is cold. So we have been cranking the heat up in Granton's room. We don't know how long we are going to stay here but it is definitely looking like it will be longer then we thought. We are used to hospital life and doing pretty well. However, I forgot how much I have to mentally make my mussels relax so that I can sleep. One beep from his monitor and tense all up and have to start over again. As for Granton, he seems fine. He has seen half of his life in here and seems right at home. He does not seem to be in any pain. We have noticed he looks kind of pale seems much more tired. He is not very happy about the IV and wires but he is dealing with it. We are definitely breaking his TV rule. At home he is only allowed one TV show a day (Sesame Street) but with being hooked up to a machine he is pretty limited to just siting around and is quickly becoming a couch potato. Any way we don't know what is really wrong with him. We think he has a virus and this has something to do with his antibodies killing his RBCs. We are praying for him to defeat the virus and for his RBC count to improve. Actually, I have just been praying for him to get better without being very specific. Please join us in praying for the little guy's improvement. Thank you

This seems a little foreign to me, but yes, I can still type. Fortunately, Granton does not have RSV or influenza. We think he has a cold, but his O2 stats have been lower today between 88-90 and he had a low temp. so the doctor is keeping him again tonight for observation and maybe blood tests in the morning. His ecocardiogram was normal. He is just a little pale with the sick eyes and sleepy. His cough and runny nose hasn't gotten any worse since yesterday.

I would also like to say hi to my friends in Anamosa (Joyce) who commented a month or so ago. Thanks for keeping in touch, I hadn't forgotten about you. Just now getting to the internet. Marsha Ketelsen has done a great job gathering articles for us, and speaking of articles...Granton was on the front cover (big and bold) of the treasures magazine put out by the hospital. I really enjoyed reading it and was surprised to see the magazine. A pharmacist recognized me and kindly gave me his copy. I'm sure we'll get some in the mail.

Hope everyone is doing great.

Jenni

Changed plans

Looks like the plans have changed with Granton again. He has a small fever and will probably have to stay in KC again tonight. He did have an echo gram that showed his heart was working fine. There was an interruption in the hospital with another person so I haven’t been able to get anymore info. Please just keep praying. I will fill you in as soon as I can.

I have a new report and I think it is pretty good overall. They did an x-ray on Granton’s chest and it did not show any new damage. The also gave him a breathing treatment with albuterol and he seemed to be better after that with a higher oxygen saturation level. They decided against the cat scan which is a good thing because they felt he was not bad enough off to need it. However, they will give him another kind of scan today. Jenni said, he seemed to be feeling better last night. They did not even have to stay in the hospital. They spent the night in the good old Ronny Mac house. Oh yea, I almost forgot, Jenni wanted me to make sure and tell everyone that the little man is not as little. He weighed about 21 lbs. Anyway please keep praying and I will keep giving reports.

Big prayer request

I just got of the phone with Jenni and I have a prayer request for Granton. She called me from K.C. Granton had a routine checkup today and it looks like he may be staying in the hospital. I don’t know how long but Jenni acted like they should be able to come home tomorrow. However, I am sure she doesn’t really know either. His pulse ox was down and his RBC count fallen back to 7.1. This is not a huge surprise to me because I thought Granton might have been having trouble last night. He has started sleeping through the night but he got up twice last night. The second time he did not want a drink. He just wanted to cuddle. He was breathing hard and I could feel his heart pounding on my chest. He also has an ugly cough. I think they plan on doing a chest x-ray and a cat scan. Obviously, we are no stranger to difficult times with our little man. We have learned to trust in the Lord everyday. Today is no different, we will be looking up to our savior. Please join us.

We enjoy sharing

Well I am happy to report that Granton slept through the night and he has not had one of his vomiting spells since my mom posted the last report. We are still watching him very closely and looking forward to when we can take him out and show him off. However, we are keeping him pretty isolated until we make it into spring. Back when Granton was on the oscillator he swelled up all over. I don’t think we posted any pictures of him because he just looked to bad. His head was swollen so much that his ears were just as wide as his shoulders. I actually keep a picture of him when he looked like this on my desk with a caption across the bottom that says “Trust in the Lord and never give up.” Anyway, when he was like that we, and the doctors, were concerned that this would put a lot of pressure on his brain and cause brain damage. I think those old fears make the little things he does more precocious to us. I love to see his little mind working. For example, I caught him standing in his crib the other morning with his arm over the top of the railing working over the latch that would allow him to escape by lowering the top and bailing out. I told him he was a stinker and he should not touch that but inside I was proud. Last night we got to play together and I lined up a bunch of farm animals in front of him and placed his toy barn over to his left. I would say something like “Granton, put your pig in the barn.” Then he would pick up his pig and put it in the barn. He did this with a bunch of animals. It makes me feel so good to see how many prayers the Lord has answered. We are so happy with the little guy’s progress and we enjoy sharing each step. Thank you for sharing with us.