Thanksgiving

We have been celebrating Thanksgiving Week instead of Thanksgiving Day. As you know, we have a lot to be thankful for. The day Jenni brought Granton home will be one of the fondest memories of my life. I don’t think Granton remembered home, but I think he knew he was finally where he belonged. He was so happy. He gave us kisses continually that night. He also loved the carpet. This is the first time he had ever crawled on carpet and he was much faster. It was so much fun to see him racing from one end of the room to the other. Personally, I don’t really know how to describe the way I felt when they got home. My two biggest emotions were probably relief and joy. Trust me, it felt great. As usual, Grantor was the center of attention. All the local TV news stations (ABC,CBS,FOX, and NBC) drove up to Bolivar for an interview. The local paper also wanted a picture. All of it is still soaking in. We have had a wonderful day today. Granton ate more then I have ever seen today. I almost wondered if he was going to hurt himself for eating so much. Obviously, he didn’t. He loves being with his family as much as we love him. This is probably my best Thanksgiving ever. Not only because Granton is home, but also because the ordeal we had with him opened our eyes to so many things we have to be thankful for. It has taught so much. I have learned to be thankful for things I wouldn’t have recognized before. I think it is amazing how God has used Granton to teach me recognize different events. At Easter I faced the reality of loosing my son on the weekend we recognize God giving his sun for us. On the July the 4th watched the birth of independence as my son experienced freedom from a tube that had been in his throat for three months. On 9-11 I am reminded on how our nation pulled together because of a terrible disaster. This happens every day and it was evident on this day because we experienced an entire staff line the halls to witness Granton leave the hospital. What could be more fitting than having Grantor come home on the week we recognize all the things we have to be thankful for. We also want to thank all our readers who prayed and did so many things for us. Happy Thanksgiving! We all have so many reasons to celebrate.

Oops

Daniel and I posted at the same time so don't miss the doctor's visit info. on the post right before his. Thanks. Jenni

The big day is finally here!

Jenni and Granton are at his check-up right now. We completely cleaned and moved out of our Ronny Mac room yesterday. Jenni and Granton slept together last night because we packed up his bed. They just got up and walked out of his room for hopefully the last time ever this morning. She had him on one hip (we packed his stroller) and a small bag on the other. She plans to walk him straight out of the hospital to the car, which is already gassed up, and drive directly home. We are so excited. Pray for a safe trip home. I hope Granton enjoys the ride because he has not been in a car for more then five minutes since he was five month old.

On Our Way

Just wanted to give you some good news as we travel home today. Granton now has 537 CD4 T-cells and his last count was 71 in September! Also, his hgb went up to 10.4 and his igG (or B-cell count) was higher than it's ever been at 1180. The doctor saw some lymph node tissue developing around his tonsils today. A normal scids patient would not have tonsils, so this is another great sign that his own immune system is developing. We won't be "normal" until spring so until then we are still taking strict precautions. And, typically a patient would not be sent home as soon as Granton, but his transplant has been a successful one and has worked faster than we expected. We will get another engraphtment test later, but the last one showed 98% and that was over a month ago. Last, Granton weighed 8.196 and that concludes our doctors visit which turned out to be all great news!

Jenni

By the way, Granton has been saying DaDa all morning and all last evening and keeps looking at the door or the phone. I thought you might want to know Daniel. :) See you soon.

Journal Entry: Melting Mom's Heart

Driving home today I teared up thinking of all the heart-melting moments I've shared with Granton that were almost missed. Thankfully, I can appreciate each one now because--as Daniel quotes under the hospital dome-- "Jesus Saved Granton!" Most of these moments have to do with his age and the developmental stage he is at. None the less, I still think they're little treasures that every parent shares and holds on to. The first is my favorite--Granton's open mouth kisses he gives all the time when I know good and well that he can make a fish face, pucker, smack, and/or all of the above. Then, there's the cuddles, followed by his love pats as he mimicks my own gestures. Next, I laugh when he blows raspberries. This reminds me of a story. Once, when we were in the surgery clinic for an appointment, Granton was holding real still and quiet while the nurse put a nitrate stick on some granulation tissue around his g-tube. Apparently, the small procedure is supposed to sting a little, so the nurse said to Granton that he was being such a big boy. The second she said that, he stuck out his tongue and broke the silence with a raspberry right in her face. We busted up laughing. Then the nurse said that his timing couldn't have been better. And, finally, countless other baby memories like dancing to tv commercial music; leaving handprints in various places; bear crawling everywhere; pointing and attempting to read a book in a foreign language; playing pattycake; driving--or should I say backing up--his Lightning McQueen car with one hand like he's Joe Cool; belly laughs for silly reasons; and of course the classic peek-a-boo as we've mentioned before. All of these are running through my mind as I look forward to our long- awaited trip home!

Jenni

Homecoming!

We have exciting news. Granton is finally coming home. After being gone for over eight months, Granton is moving back to Bolivar. The big day will be Monday, the 24. Jenni plans to bring Granton straight home from his check-up. Granton will still be receiving weekly check-ups but now he will stay in our home instead of the Mac house. We are so happy and joyful with this news. We have wanted so much to have Thanksgiving in our home here in Bolivar. For a while, we weren’t getting very reassuring reports that this would happen, but now we have the green light. I always thought I would write some big, long, grand blog for this occasion, but we are so happy with news we don’t have anything to add to it. Granton is coming home! Granton is coming home! Oh, thank you Lord, Granton is coming home.

Hi everyone,

Jenni and I have not posted anything for awhile because we don't have much news to post. I just got back from spending the weekend in KC with them. We had a great time. We gave Granton his first hair cut. He took it very well. I gave him a pot to bang on while we cut his hair and he was preoccupied enough not to make a fuss. He looks a little older now and his hair is much more blond. He is getting a more personality. He is still not talking but he makes noises that mean things. Jenni speaks much better "Granton" than I do. It is funny to hear them talk or argue with each other. She is a great mom and has handled this so well, but she is ready to come home. Please keep praying for this. Granton looks good and keeps getting stronger. The only thing that could cause concern is a rash he is getting. It is mainly on his back. It looks like dry skin and that is what we think it. This is something else we would like prayer for because a rash is also a sign of graft vs. host disease and we really do not want that. The doctors are very cautious and I am sure they will be alarmed if there is any reason for alarm. Please pray for a good report at his next check-up. We feel we are getting close to being home together and we would like to avoid any setbacks. Thank you so much for your prayers.

I have no new news about Granton other than he is doing fine.  Here are some new pictures.

 Granton and I watching football.

      Granton getting into something he's not supposed to.

Granton hanging out with mom.

Praise Check List

1. Granton's liver enzyme count dropped again...a lot this time. :)

2. Granton's weight is stable and he can continue to receive nutrition orally without depending on the g-tube/mickey button. :)

3. His weight was 7.916 kilos which came up from Thursday--7.76 kilos. :)

4. We will be visiting the doctor once a week now and have decreased the amount of one more medication. Mom is happy because the weather is getting colder. :)

5. Granton received his Synagis shots to protect him against RSV. :) These are expensive shots that only specific patients can receive--like Granton who has been immune compromised.

6. His blood pressure was actually normal to low today instead of on the high side which is his usual trend. :)

7. We get to move to a new house soon. :)

8. We have lots to be thankful for this season and always...especially your prayers! :)

Jenni

We have two answers to prayer. First, Granton's liver enzyme count went down which the doctor's were nervous about. And, second, Granton has been completely weaned from his Fk506! That means his immune system will be able to fight off infections easier if he is exposed to anything. This is also a big step closer to home which we are praying for. I am getting more concerned when I go to the hospital with Granton and little kids want to peak over his stroller or I hear yucky coughs. I am praying that Granton will not get RSV again. Speaking of praying, some friends from the Ronnie Mac House and PICU just informed us that their newly adopted baby boy, Owen (who I've mentioned before), has been given only a few months to live. The couple was told they could take him home to live out the rest of his life. Owen's latest surgery has caused him more stress, and his parents are struggling with heartache right now. They are hoping in a miraculous God and praying everyday for their son's chance to survive. Please lift up Owen today. Thank you.

Jenni

Something new to be thankful for

I’m sorry we have neglected the blog lately. Jenny and I have been a little extra busy. She got to come down for a check-up at 7:30 Tuesday night. We were pleasantly surprised that the Doc. scheduled an ultra sound the next day (Wednesday) because we were very curious about the baby’s sex. If it is a boy, we have a 50% chance of SCID’s. A girl can have SCID’s also, but only as a carrier. Well, the results are in and we know with 80% percent certainty that Granton will have a little sister. We are thanking the Lord for peace of mind with Bayless Baby number two. We love Children’s Mercy in KC but we are ready to all be together at home in B-town. Please keep praying for this. Granton continues to improve. We did have a scare with him on Monday. Jenni woke up as Granton was being strangled by his G-tube. He was fine after she unwrapped his neck. He caught his breath and settled down pretty quickly. He has been through so much that I don’t think this kind of stuff scares him very badly. I can remember when his lungs were so bad; he was fighting for every breath and still loosing ground. I don’t know how much his little mind and body remembers, but it must feel good knowing something as simple as unwrapping a cord can improve his breathing when not very long ago nothing seamed to help. In many ways I look up to Granton because he has had to fight so hard through so much. I have never had to endure something as difficult as he has. I am a big believer in the philosophy that if it doesn’t kill you it makes you tougher. I think God has made Granton pretty tough. As always, we thank him everyday for Granton and now we thank him for Granton’s little sister too.

Real quick update. Granton is very energetic and doing well. He weighed 7.88 this morning, so again about the same. I am not concerned as I explained to the np today, because I am very pleased with his nutrition schedule and the amount of calories he receives per day. I don't think we could force him to intake anymore than he already does...he is eating a drinking a lot! I emphasized his build and family history on top of the fact that it may take some time to get to 19 lbs. Granton looks as healthy as I've seen him here in KC and his loose stools are 1 or 2 a day now. :) We are still on target for the move home before Thanksgiving. His liver enzymes were up again, however, more than Thursday. The doctors have discontinued two more meds and are giving another through ivig so I am praying that this solution works to bring the liver counts down.

Two new milestones: bear crawling and pushing toys as he walks. Granton is better at balancing now and is not afraid standing and stepping.

Jenni