Monday, May 26, 2008

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.

Sunday, May 25, 2008

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

Saturday, May 24, 2008

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.

Friday, May 23, 2008

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

Wednesday, May 21, 2008

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

Saturday, May 17, 2008

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

Friday, May 16, 2008

Scheduled Chaos

This week we have been doing much better at getting into a rythym and schedule. Our sleep schedule seems to be at a sustainable level and we are both able to care for James and spend some time with Abby. Grandma has been a big part of this and the question is can we do it without extra help next week.

Abby is teething her center top teeth. She already has the next set of upper teeth and center bottom teeth. It hasn't been as bad at night as in the past, but she has been more cranky overall.

James is gaining weight. How much exactly is tough to tell. We are confident that is at least 6lbs 13 oz and possibly 7lbs now. His feeding was outstanding at the beginning of the week, but has struggled the last few days. This is partly due to the fact that we tried Tylenol with Codine, which knocked him out too well. This made him too lethargic to keep up his appetite. We will either try a half dose or save it when he is in more pain. Maybe we can just drug our kids at night to get our rest!

Little Dude continues to heal, but also continues to have new blisters. There have been a few that have appeared on newly healed skin on his legs which is always dissapointing. We continue to try new methods to heal and prevent blisters. We still hope that we can get the healing to outpace the damage of skin. Time will tell on this.

Other than a hoarse voice, his insides seem to be stable. No gagging episodes since we went to the hospital and breathing seems ok. Sometimes there is gunk in or behind his nose that can affect eating.

His stools might be getting firmer. This is nice because instead of many runny diapers we hope to keep it to just one or two a day. We have doubled the does of Imodium AD and the Codine may have helped this also. We have stopped the breast milk as the pumping is done. We do have a few days supply in the freezer in case we need to loosen things up.

We urge you to read an article by cutting and pasting the address below: (can't get the link feature to work)

http://www.hattiesburgamerican.com/apps/pbcs.dll/article?aid=/20080511/lifestyle/805110325

This article may help explain the hope of miraculous healing that we have for James. What it doesn't mention is that parents in situations like these have other options. Ones that we honestly never for a moment considered. We could have finished the gentetic testing and determined that James had EB before birth. We shudder at the thought of the options that follow. Either playing with lives by deciding which embryo's get chosen or even worse killing a life in the womb. Unfortunately this does often happen and with children that have non-fatal diseases or even none at all.

Also understand that even without a miracle, we have a hope that drives us everyday. That if James passes on before us, he will have full healing and total comfort in Heaven with Tony. The fact that James is now comforted and cared for by the same Loving God as us gives us comfort everyday.

Please pray that his wounds would heal at a faster rate than his skin is damaged, that we would find a schedule and pattern of life that would work long term and for miraculous healing for James.

Stu, Tashia, Chompers and Larger Dude

Monday, May 12, 2008

Baby with a Blue Dress

About a month ago we took Abby in for her first photo shoot. You can view the photos online and even order them if you wish. They will be available for viewing until May 21. Click on the link below and type in uken for the password.

http://www.photoreflect.com/pr3/ThumbAccess.aspx?e=3647458

The last two days have been much better for Little Dude. Both days he's matched his highs for intake. With the extra calories he's around 140. His weight has been moving back up as well and hopefully continues. He keeps it down well which is good because Tony had reflux issues. James does well belching. Not sure who he got that from, we'll let you all take guesses on that.

His wounds seem to be doing better and likely is the result of extra calories and nutrition. We think his elbow is now to the scar tissue stage meaning it needs only protective bandaging. Scabs are falling off his early leg wounds and are leaving pink skin as well. His bottom is still bare but isn't as raw and shows signs of repair. The wounds that are still not sealing up are the wrist, belly button and his original leg sore.

We haven't had to lance as many blisters the last few days. Grandma Beth will be back tonight and with her help we can hopefully get new clothes to help prevent them better.

To give you an idea on how many blisters have formed, we started using a box of 100 lances almost 2 weeks ago and we only have half a dozen left. We usually lance multiple blisters with each one. Dad wasted one tonight after accidently slicing his thumb. Many are blisters that refill, but the majority are new. We don't remember Tony having this many.

Thankfully most are small, pencil eraser size or smaller. But there are the occasional large ones. Regardless, it's tough to watch our little man go through this and when we step back and look we realize he's similar to the scary pictures you may have seen on the web for EB.

If we keep him lubed up with Aquaphor it does help his tempermant and the gas drops do seem to be helping that effect. We started trying a new product called Desitin Clear. It's their version of Aquaphor and seems to work well on his bottom. It applies very gentle and seems to be protecting between diaper changes.

We did get some rest, but it may be a long time until we feel fully refreshed. It will help having more help this week and Abby may stay longer at day care for a few days a week.

Thanks for keeping our family in your prayers.

Realizing that Spring is here to stay,

Over Fed, Mothers Day Award Winner, Poser and Scale Tipper

Saturday, May 10, 2008

Refilling the Tank

There's still one thing worth more than gas right now and that's sleep. We caught a few extra hours, but need quite a bit more especially after the last few draining days.

James ate well yesterday but is slower today. His weight gain has stalled for the moment and is at 6lb 8oz. We decided to increase from 26 cal to 30 cal. For comparison, regular formula and breast milk is 10 cal, so we are adding 50% more just to try and get weight gain. We also are using half breast milk and half formula to see if that change will firm up his stools.

He still seems to be in pain and it's tough to tell if it's just normal infant gas/bowel pain or from wounds. We assume that much is from the latter even though it's likely "normal" to him. If/when things get worse we will be considering pain management, but for now he's just getting tylenol.

Yesterday morning was very tough as he had some blisters start on his back. This area of the skin seems to be thinner and they spread fast. We seem to have contained it to a small area, but it's not fun to drain a blister larger than a grape.

Our spirits did get a lift with the arrival of family last night. Today we ventured out of town to the metropolis of Storm Lake for a quick Walmart stop and some good Mexican Food.

We can say it enough. Thank you to everyone that is providing meals, a helping hand, encouraging words, lifting us up in prayer and everything else. You have all been such a blessing to us during this trying time. We are also thankful that most of James medical needs are being covered by insurance and have no financial concerns at this time. Some families with EB kids are paying over a thousand dollars a month to bandage their children, some who will live past 30.

Our prayers right now are for endurance, rest, healing and comfort for James.

Tired, but very thankful,

Stu, Tashia, A Marion and J Glen

Thursday, May 8, 2008

Is it Friday yet?


Last night took a few more hours of sleep away from us. Abby has been getting up early and last night needed to be rocked back to sleep twice. A typical night between 9 and 7 includes at least three James feedings and a few pump sessions.

James currently requires the full attention of 1 parent at all times. Sometimes he will stay content in the crib for about a half hour before getting cranky. We try not to let him stay cranky because his voice is now gone and he gets figity and causes more blisters. We are going to add gas drops to the medicine list to ease that pain as that accounts for a lot of it. So far the stools are still runny and can explode at any moment.

When Abby is around 1 parent can manage both kids only for very short periods. James requires too much attention and focus which leaves Abby starved and getting into mischief. Since Dad works when Abby is being watched, that really leaves zero time for ourselves. It does take it's toll and we are longing for a break this weekend even if for a few ours out of the house together and a few more hours of sleep.

It seems as if James is still gaining weight but the scale didn't move up the last two mornings. His feedings are as strong, but he has compensated by eating more often. He now coughs an average of twice a feeding and this really wears him out.

His skin is still progressing along with signs on the inside as well. His bottom is the same and it's likely that the rest of the wounds are healing slower now. With that great week he had we were getting more optimistic, but the last 3 days are what we expected. It just seems faster that it progressed with Tony.

James is feeding better, but that may be attributed to higher calorie formula. It wasn't until we were home with Anthony in his 4th or 5th week that he was coughing and this hoarse. Not great news, but that's the way it is with these kids.

We did talk with the nurse educator from Debra (the non-profit EB cure and resource organization). Not much new we didn't already know, but she did mention siblings almost always have the same severity of the disease.

The hardest part right now is seeing our Son suffer and know there is little we can do about it. We pray that if it is not God's will to heal him that his suffering will be minimized. Though we love him so, there is also a selfish part of us that want to be relieved of the resposibility of his care.

We hope James is touching your lives like Tony did for many. As long as he's with us we hope to share him as best we can.

Abby has been enjoying her day care and has been doing some exiting things. She likes the sandbox and playing with her new friend. We measured her today and she grew over an inch the last month. She is so big now compared to James, but most kids make her look petite. She seems to be adapting and just wants some more attention.


Longing for peace for James,

Stu, Tashia, Sprout, Jimbo

Tuesday, May 6, 2008

Hungry and Cranky Dude

Little dude is getting bigger. He weighed in at 6lbs 9oz this morning and he was also weighed at his doctor appt. and he measured the same. It's very likely that the hospital scale was off. It's tough to say if his birth weight was accurate, but the good news is he is steadily gaining weight now. He now eats less often because now he gulps down over 2 oz. He's up over 120 cal/kg/day now and we hope to keep him there and more. He does aspirate and cough about everyfeeding, but he seems to be dealing with it at the moment.

The downside to eating more of the fortified milk, is that his stools are now runny. He usually dirties about 3 diapers in 30 min or less about once a day. This keeps us busy and is hard on his bottom. He also gets very cranky before hand and has his fare share of gas as well. We will try some medicine to slow the stools down and help him keep some of the fluids.

James' crying is now hoarse and sometimes silent. It's another reminder of the internal trauma. Tony's vocal chords showed scarring on his scope.

His blisters are a bit worse the last two days. We aren't exactly sure why, but he is a bit more active and now that he's taking more fluid that may cause them to spread faster. It's frustrating to see this at this point as we really want to turn the corner. It's getting hard to stay energetic and creative in trying to find better ways to protect his skin.

We've had some great help this week with watching Abby and house chores. It's allowed Dad to go to work and James to have 1 on 1 attention. Abby seems to be adapting and a regular schedule will help that.

It's nice when picking Abby up because she's eager to see us and wants to be in our arms. That's a great feeling especially right now. We can't help but think that God feels the same way when we call him Daddy and rest in his arms and rely on his strenth.

Please continue to pray that we would get the needed rest and the wisdom to prevent and care for his woulds. That James would have comfort from pain, that his wounds would heal, that he would continue to gain weight and eat well and that his stools would firm up.

Adjusting to our new everyday life,

Stu, Tashia, Abby and James

Sunday, May 4, 2008

On Our Own




The last of our family help left at 1:30 and we are now on our own until the weekend. We very much appreciated help from all of our family, including Tashia's mother and sister this weekend And soon after they left, reality hit hard and fast. We had planned to give James a sponge bath and change his dressings while Abby napped. Abby didn't cooperate and since it's a two person job, we had a screaming mad daughter for over an hour. Oh, and besides James peeing on everything for maybe the 10th time (we've get distracted), dad got some dirty jeans from James.

All total it took almost two hours, but it was much needed as the Little Dude was starting to get a little stank going. We were pleased by his wound progress. The elbow and umbilical area look great and appear to be close to or in the scar tissue phase. The wrist hasn't progress much though.

His bottom area has gotten a bit worse. Not many new blisters, but the old skin covering on the blisters has slid off. We now have to be sure to keep that area coated, otherwise he feels pain. Everything that is still covered with the skin seems to also be in the scar phase, but it's hard to know if we can get the newly exposed areas to progress.

We have to take it with a grain of salt, but he did gain some weight back and appears to be at 6lbs 6oz. His face does seem fuller today. He finished yesterday very well for feeding and today was almost as good. James also got to feel the wind in his face as we spent some time outdoors today.

A few of our friends visited us yesterday and we gave them the local tour. It was the first trip out for Tashia since the birth other than to and from the hospital.

As you can see Abby has learned to be gentle with her fragile brother and has been lightly kissing his head and patting his head with her hand.


Well, we are both quite tired and are going to try and get a head start on sleep for the week. Pray that we would be patient and trust that what to offer our children is enough for the moment.

Stu, Tashia, Gentle Sis and Clean Dude

Saturday, May 3, 2008

Silky Soft


As you can see James is getting quite the outfit. He now has leg sleeves to match his arms. This helps further protect his legs. Even with the latest diapers, the ribbon knot would still hit his leg and maybe was adding to his blisters. The hat was Tony's and was part of a package that was sent by a lady in Utah. It was from here that we were able to get some of this special fabric to make these clothes.

After a few great days for James, yesterday was a bit tougher. Yesterday morning after midnight his feedings decreased quite a bit. It was obvious that something changed inside that was giving him pain and discomfort. It wasn't until last night that he started getting back to where he was. His average for the last three days was good, but he does need to keep increasing.

The baby scale we are using from the clinic doesn't seem to be the most accurate. Also, it's reading about 8 oz or more lower than the hospital. It's tough to know which weights were correct, but it's likely that he has not back to his birthweight. All infants usually don't climb back until their second week. If the scale is reading right, he's been losing about 1/2oz or holding steady.

Starting Monday, Abby will be going to a home to get watched from about 9am to 3pm and later on some days. This will allow dad to work and mom to have J Glen alone. We may also need nursing or repite care in the future, but probably won't do that at this point.

Abby seems to be doing better since we are home and has learned that James comes first. Her cough is still there at night and was up quite a bit. Thankfully, Grandma Sue and Aunt Chelsie came last night to help as Grandpa and Grandma Uken left late last night. We took a picture of her first fat lip. Dad was taking something away from her and she fell face down. It wasn't too hard, but cut her lip.


Our plan is to refill our sleep tanks as much as possible this weekend to give ourselves as much steam as possible for the week. We will see how we hold up. If James is stable it will help a lot.


Thankful we don't have to rely on our own strength,

Stu, Tashia, Abby and James

Thursday, May 1, 2008

Pictures!!!


We've started to upload our pictures. Click on the link to the right to see more of our family. This is a photo from 10 minutes ago. You can see he lost a bit of his chubbiness the last few days. Maybe we can add it back on and then some.

James ended the day with his best total, slightly better than two days ago. He had some big gaps last night, but made up for it with two big feedings this morning, one over 2 ounces! Hopefully he will steadily continue his feedings.

Mom did get some extra sleep because of the less feedings, but still has to get up to pump a few times. Dad did relieve her this morning and hopefully get used to getting up even earlier.

Have a good day,

Stu, Tashia, Glamour Shot and LD