Day by Day

This has been quite a gap after the almost daily updates about James. Our tracker shows that there a lot of people that are still checking in on how we are doing. We greatly appreciate that.

We are now half-way through a "normal" week and it has been good to move forward but also very tough at times. The hardest part is that we are both away from each other for a much longer period than we are used to. Dad is back to work full time and mom is holding down the home front, which was a bit behind to start the week.

Today has been one of our worst days and we are looking forward to the weekend. It's hard to remember exactly how we dealt with it after Tony but it's good that we don't remember those things. We do know it gets better with time. Another reason today was tough was some bitter sweet news we were alerted to yesterday.

There was a couple with four children and two had a severe form of EB. Last fall they lobbied and were allowed to try a potential break through bone marrow transplant on the youngest brother using stem cells from one of the healthy older brothers. They just released news yesterday that it seems to be working and may be a cure for EB.

Obviously we are overjoyed for them and all EB families as we know how hard you hope that your child would be cured. This is providing huge hope for them all and shows promise. Besides revisiting the facts of EB, we were reminded that it's too late for our two sons and it would also be a longshot for any future children. We will be going into more detail on that and provide a link to the stories in a future post. Consider that our cliffhanger for this episode.

We both decided to set aggressive goals for losing weight in the next 4 weeks. It's something we wanted to do and decided it may be good to keep us active. Yes some of the blame is from all the wonderful food we were provided for the last month and we would eat it all again if we had the chance! So far it's tough getting up in the morning to exercise, but Abby assures us she would help with that regardless.

She has been good at night until last night and may have some teeth on the move again. It's fun to watch her smile and laugh with her new chompers. She has a new chuckle she likes to show off. Abby still says hi and bye to everyone she sees, usually more that once.

Another goal we have is to get started on a memorial flower garden in our yard. We were sad to leave Tony's in SF and learned that it was very helpful for the grieving process.

Again, we are amazed and overwhelmed by the condolences and comfort we are receiving from all. We can't thank you all enough for everything you have provided and continue to provide for us and our family. We truly feel loved and taken care of.

One of our biggest challenges is to continue to rely on God's strength to get us through. It's easy for us to think we can handle things on our own, especially when things go well in life. We must remember daily to surrender to the one in control and that is when we truly find peace.


Still drained, now with sore muscles,

Stu, Tashia and Miss Social

A Better Day

Yesterday we packed up James' things but didn't have much energy to do anything else.

Today was much better. We were able to pick up and tidy the house and have finalized all the funeral details. It was a very nice day out and spent time outside for part of it. Family arrived for supper and we are all in better spirits.

Abby was having a great day until she slipped on the front porch steps. She managed to hit and scrape her chin, lip, gums around her latest tooth and her forehead. It's not as bad as it sounds, but it's changed her outlook on the day.

Even if we don't bandage her wounds, they will heal and disappear in a few days. Of course our minds will almost always realize that to her brothers, this would be a disaster. We have to balance between being overly protective and concerned for our only child and being under sympathetic and concerned because we have seen the worst.

We are both looking forward to the services so we can move and dreading going through this a second time. It's a rare event that parents have to bury a child and we will do this now for the second time. We also look forward to celebrating James' life and giving glory to God.

Please continue to pray for healthy grieving for our family and safe travel for all.

Comforted by the only One who truly understands,

Stu, Tashia and Tough Girl

PS - we forgot to leave the webisite for Abiding Savior, the location for the reception on Wednesday. We should arrive around 11:45

www.knowingthesavior.org/

Again all are welcome to come to one or all of the services/receptions.

Details

Going through the arrangements during these times isn't easy or enjoyable. However, it's a necessary step in the process. Even though Abby keeps us busy, we are still tired and weary. We know by experience that it does get better with time.

Below are websites with information for this week. The link feature still doesn't work for me, so you will have to cut and paste.

Hills of Rest (burial) - www.hillsofrest.com/

Arthur Evengelical Free Church - www.arthurefc.org

Ida Grove accomodations - www.idagroveia.com/Resources/pages/aboutig_business.html#Anchor-44867

Funeral Home Site www.christensenhuffman.com/

That's all for now, keep visiting for more.

Stu, Tashia and Abby

Tuesday and Wednesay

It's a bit lonely and sullen even with the family around. We thank God that we have Abby to give us a lift. She is going to keep us active for sure. Her two top front teeth have broken through, but they are still making her a bit restless at night.

Nights are especially lonely since we had to have James between us in bed at night to make sure we heard him cry and breath. Our sleep has been sound and eventually we will be back on a normal schedule.

We were dissapointed to find out the casket has to be closed. Besides kissing him goodbye one more time, we wanted everyone to see him that haven't had a chance.

Services will be Tuesday and Wednesday. Tuesday there will be visitation from 9-11 at the Arthur church with a service at 11 and reception following. Wednesday we will have the burial service at 11 am at Hills of Rest in Sioux Falls, followed by a reception at Abiding Savior.

All are welcome and invited at any of the services. Please pass this on to those you can. We will provide directions and other information in the days to follow.

Missing our Little Dude,

Stu, Tashia and Abby.

Home with Jesus

James passed on to his Heavenly home at 3 am this morning. He proved to be quite the fighter.

Check back for information on the services.

Please keep our family in your prayers.

Resting,

Stu, Tashia and Abby

Final Moments with our Son

We checked back into the local hospital Monday afternoon. James was back to about 6lbs and none of the meds have stopped his fluid loss. His fever did break.

All of our attempts to get him fluids at the hospital failed and we have decided that He is ready to go home. This was Monday night and amazingly he is still with us. He is a very strong little guy if only his skin were so...

We are expecting him to leave us at any time and the family is all at the hosptial with him. It may not be right away, but we will still update this site with the news and information to follow.

Weary and relying on God's strength and peace,

Stu, Tashia, Abby and precious Little Dude

Rolling with the Changes

Go figure, it wasn't even 30 minutes after typing the last update that the Little Dude decided to start throwing up. It was only a few meals yesterday. Today proved much tougher for him. Since 5am he's had over 15 diaper changes and his stools are totally runny.

He also has been running a temp and hasn't slept for more than 10 min straight. So around 6 we took him to the ER. There's no acute care here, but we got service right away. We did take him home with the plan of giving him the Tylenol with Codine every 4hrs along with continuing the stronger doses of Imodium AD. He also was started on some oral antibiotics this afternoon. They started one bacteria culture from the stools and are trying to collect more. However he's only had one right after getting home, so that's good news.

James is also looking a bit better. He was looking really rough at 6 and still is pretty wiped out. Good thing he's been gaining weight. Hopefully the next dose of Codine will knock him out and give him some good rest. The bad side to that is it's tough to wake him enough to eat.

Needless to say it's been a rough day. This is why we are reluctant to give such raving reports like the last because we know days like this are right around the corner. Since this has come on fast we think it is likely an infection either viral or bacterial. His wounds haven't looked infected so we are surprised to see him like this. We are hoping he turns the corner on this so we don't have to have an IV as we doubt there is much experience here giving 7lb kids IV's. That and we saw how hard it was with Tony.

That said, the weather has been great and we both slept well because one Grandma took care of James and the other Abby. And of course we still felt tired in the morning. We hit two quick rummages before giving our nickel tour to some friends visiting from Sioux Falls. After that we spent a few hours at the park with the kids. Surprisingly our daring Abby is scared of the swings.

Dad is well into his project of installing an underground dog fence. Reina should enjoy her expanded territory and it will be easier on us. The cat has been sneaking out quite often with all the company and Dad had to climb out on the roof to get her while installing a window AC unit.

Even with the extra sleep we are quite exhausted from the the emotional drain today. Even though we know he would be in total peace in Heaven we are scared to have to let another child go. It seems like well over a month that we have been out of the hospital the last time, but he's just over 3 weeks old and still seems to be progressing much faster than Tony.

We are continually strengthened by your prayers and request them even more for endurance, wisdom for decisions and most of all comfort and healing for James.

All we can do is trust, pray, praise and do what we can for our family.

Stu, Tashia, Abby and James