Sunday, January 31, 2010

Sunday afternoon updates

Saturday was a rough day for Eli. He's been choking alot lately and I'm rushing to try and figure out new positioning for feeds and after feeds and such. It's constantly a struggle and I spend so much time staring at him making sure his breathing is just right. Any little cough or gag and we are running to check on him, knowing that by the time we hear him, he's probably already aspirated. Gotta love SILENT aspiration. :( Last night his stomach was unhappy and he was refluxing alot and everytime I would hold him he would want to nurse because he doesn't know what else to do to help himself feel better. Nursing of course doesn't help and then he's back in the cycle. I finally got him to fall asleep on me on the couch last night. Of course the position that was comfy for him was horrible for me. We stayed that way for almost 2 hours, simply so he could get some much needed comfortable rest. My shoulders and back are of course throbbing after it last night but I do what I have to do for Mr E. He's in a bit better mood so far today, but his rough part of the day is still ahead. We'll see how it goes.
The 4 older kids had church this morning, and are now spread out throughout the house napping, playing, watching TV, and goofing off on You Tube. I'm hoping to get some basic housework done today, and my goal is to actually cook a dinner tonight. That's rare around here because it's almost impossible to get enough time in the kitchen to actually cook.
Ariana and I went out shopping yesterday for big girl underwear. Slowly but surely she's been getting better with using the potty so we decided to just bite the bullet and switch her over. pullup still for bedtime and errands, and underwear at the house. If she's like the boys she'll switch over to underwear full time quickly. She was so excited and picked out all the girly stuff. Go figure! :)
This week will be busy as always. We have Dr Z (GI doc), Dr Mo (surgeon for reflux surgery and GTube), home health, and we will be finishing up all the TA waiver stuff and hopefully getting that started this week. We also have 2 parent teacher conferences, 3 half days of school, 2 nights of TKD, 2 tutoring sessions after school, Bob has a doc appt, and well I think that might be all so far. As if that isn't enough! :) Like always I will try and update once a day with all the new info!
Love to all!

Friday, January 29, 2010

NG frustrations

Well the NG tube has been a week long disaster. Went to pick up the ordered tube at the medical supply place. They can no longer order a 5 French so they gave us a 22 inch 6 French. First of all we always use a 36 inch, secondly 6 was HUGE. and when I say HUGE holy cow. the nurses tried repeatedly to put it in and it wouldn't even make the turn past the nostril at all. Nobody has a 5, NOBODY. Can't even order the darned thing. So we are just going to try and push feeds as much as possible until the doc this week for the Gtube. So frustrating all around. Pushing feeds isn't so easy. little man just wants to sleep. i've only gotten him to eat 6 times today so far. Humph. It's really frustrating and I don't know what else to do differently.

the kids didn't have school today. All this darned snow. i almost feel like we are back in Iowa. They are all already bored and we still have the 2 weekend days! :)

i'm learning to crochet so that's kept me with something to do. It's definitely different from knitting, and it's been fun learning something new. i'm like always self learning, and am really enjoying it. Working on a granny square blanket right now. i'll post pics when it's done!

I would update more but I'm dragging tonight. More this weekend!

Wednesday, January 27, 2010

Quick check in

Today has been another hectic day. We spent most of the day on the phone with doctors, insurance companies, and home health. Nobody in Wichita had his size of NG tube in stock for some strange reason. After hours of phone calls finally got them ordered and they will be in late tonight/early tomorrow morning. So he'll get his NG put back in tomorrow morning. He's been spitting up alot and pretty fussy this evening, so not sure how much of the feedings he's getting at the moment. We are trying some switching around on the times of his medicine so hopefully we will start seeing a change there as well. We got all of his films on CD and will be mailing that tomorrow morning to KC. Also finished up his TA waiver paperwork this morning. They are hoping to get that started Feb 1st. I'm definitely looking forward to that as the help would be greatly appreciated and SOOOO needed! He meets with Dr Mo on Feb 4th to discuss and scheduale the G Tube. So we won't have the NG for to long.

I had to go into the doc today for a tooth ache. It's gotten so bad that the infection is now in my sinuses. NOT fun at all. On antibiotics and dragging pretty badly. Hoping they kick in quickly.

Other than that not much new to report. more tomorrow.

Tuesday, January 26, 2010

Tubes Coming Back

Mr Eli had an appt with Dr H today, his family doc. After alot of talking with her and his GI and all of that it's been decided to put the NG tube back in while we wait for his appt with the surgeon for the G tube. He will get his NG back in tomorrow morning. They are still working to get him schedualed in KC. Have to get all his charts, sonos, xrays, scans, etc sent up there first, and that's taking some time and lots of running around to sign releases. We had his appt for the TA waiver as well. Hoping to find out for sure on that by the end of the week.
Ben's IEP went well. Alot of talking about this year and looking ahead for kindergarten. It looks like we have a good plan in place and I'm so excited about the upcoming year for Benjamin!
This evening was a disaster. Ben and Ari found a pair of scissors that Emily and Jace apparently didn't put away. They cut up everything in Ari's room...books, bedding, toys, etc PLUS Ben looks like a cancer patient with virtually no hair and Ari has more layers than one would EVER want. We had to cut all of ben's hair with the trimmers and it's still a mess. Many areas are literally cut to the scalp. I'm so frustrated. Frustrated with EVERYTHING.
I'm not feeling like I can keep going. I'm exhausted. I'm missing all of my friends. I need help...I need people around. I need another set of hands, eyes, etc. I need support. I honestly never knew that life could be this hard, this exhausting......

Sunday, January 24, 2010

Look ahead to the coming week

First I'll recap the weekend. Housework, dinner at my parents, grocery shopping, and a migraine. That pretty much sums it up. Mr Eli had a rough saturday evening, but a good day so far this evening. Thank heavens because I had a migraine all afternoon and early evening.
The week ahead is going to be beyond hectic.
Monday~ Eli has Dr Z, his pediatric GI. We will have another weight check and again discuss all the surgical options. Especially since Dr F, his local urologist, wants us to go to KC now. Then it's a rush to get into Dr H, his pediatrician, and get all the phone calls and such done with KC.
Then Monday afternoon Benjamin has his IQ testing for Social Security. We were told to expect 4 hours. YIKES. No idea how Ben is going to deal with all of that. Curious for the results though.
Tuesday~ We have Eli's TA waiver mtg. They come to our home and go thru tons of questions and evaluations to rate Eli on a scale. We don't exactly understand the whole process so are interested in finding out more.
Then in the afternoon we have Ben's IEP mtg at his school. Alot to talk about there and definitely hoping to get some good answers.
Jace has tutoring. Then Emily and Jace have TKD.
This is simply the 1st half of the week so far. I've gotta get an appt schedualed for Eli with his pediatrician and if I have time I need to get into my doc. I've been having headaches and such and can't seem to get past it. The doc for me is at the end of the list, but still hoping to be able to get an appt this week.
Here are a few pictures from the weekend. The 4 older kids playing with their draws and an etch a sketch. Then Mr eli propped up with his frog, and hanging out in his bouncy seat.

Friday, January 22, 2010

Home from the Urologist

Mr Eli had his urologist appt this morning. He has been over all the scans and tests and thinks that there is definitely a blockage. He's just not sure exactly what and why and how much damage. He said we won't know until surgery. He wants Eli to get up to KC now instead of later. So we will be getting all the paperwork and phone calls and planning done ASAP. I've gotta find a place to stay, and all that good stuff. It looks like I will be having to go by myself, that part is a little yuck.
We have some many things to get done and now this on top of it all. We were thinking we still had some time, come to find out no.
Other than that nothing new to report.

Thursday, January 21, 2010

Quick Check In

Mr Eli had home health out again today. His unofficial weight was 7lbs 5oz. His temp was also elevated again, but not qualifying as a fever yet. So keeping a close eye. He had his first in home therapy with Rainbows, mostly got alot of paperwork done. The are going to try and get some respite set up, and also help get paperwork and such done for SSI. We heard back on the TA waiver and they will be coming out to do his inhome on Tuesday morning. Hoping to get everything set up and organized soon. I'm beyond exhausted and really needing some breaks.

Ariana is doing good. She had all of her meetings this week. Filled out all the paperwork to get her started in Head Start preschool on an intervention plan. Hopefully will get all the info for it soon.

Benjamin has IEP coming up next week. Everyone is hoping to have some good discussions and figure out some goals to start addressing alot of the behavioral issues. He also has all of his IQ testing next week as well. It is a 4 hr appt, so I'm a bit nervous to see how he will do with that.

Jace is doing pretty good. He's got a bit of a cough right now, doesn't seem to be turning into anything worse though luckily. He's still doing all of his after school tutoring, and is getting his speech during school hours. We have conferences next week so hoping to get some more info and ideas from his teacher.

Emily is doing well. School for her is easy, to easy. During her conferences we'll be talking to her teacher about getting her into some of the new programs for the advanced students.

Bob and I are same as always. Life doesn't change much for the 2 of us. Tonight I did sneak out with Mr Eli and we went to stitch and bitch at our local yarn shop. It was nice to get out and be around people for awhile!
More updates soon!

Wednesday, January 20, 2010

Pictures from our 48 hours together!!!

Here are some new photos from our 48 hours together!

Ari came in and cuddled up with Mr Eli early one morning. They were so sweet together.

Here are a few random photos of Mr Eli from Monday.

Ari and Ben on Monday looking cute!

Monday evening we had family movie night!!! Everyone gets pj's on and we curl up all over the living room watching movies past bedtime! Mr Eli got to participate in his 1st one, of course he slept on daddy the whole time! :)

And here are random photos of everyone from Tuesday hanging out around the house!

Tuesday, January 19, 2010

Weight gain buys us another week!!!

Mr Eli gained at his official weigh in today at his GI appt. His official weight was 7lbs 3oz, so she is giving us another week to see if we can do it again. Hopefully we can have another big gain week and really get into the groove of gaining weight. She was ok with the fact that we aren't doing any formula or polycose, and said as long as we get good gains she won't push for it. He's been a sleepy little man since we came home, outings always seem to wear him out. Home health will continue to come out daily for weight checks, so we will continue to keep a super close eye on it.
I took a ton of pictures of the kids over the last 48 hours. Hoping to sort through all of them and post a few tomorrow once they are all back in school and the house is slightly quieter!
More updates tomorrow!

Sunday, January 17, 2010

Quick Check In

Home health weight was still 7lbs 1oz. No gain yesterday. Now today he's been very fussy and very sleepy. Not holding our breath for a good gain. He cried for almost 4 hours this afternoon and took alot of work to calm him. He's been mostly calm for about an hour.

Benjamin has been a disaster this evening, and of course Ariana follows along with whatever he comes up with. Quite a mess. Emily is home from her sleepover and starting to look pretty tired. Jace is also looking a bit tired after his sleepover at his grandparents. Hoping to get the kids to bed soon and have some quiet time.

The next 2 days will be nice as all 7 of us will be home together for 48 straight hours. It's been awhile! Hoping to get some pictures taken of everyone and will get those put up soon! Eli has his GI check on tuesday so will also update that when we are home!

Saturday, January 16, 2010

Another home Health scale gain

We got to meet Eli's weekend home health nurse. He was super nice and really good with Mr E. Eli gained a bit of weight and his unofficial weight was 7lbs 1oz!!! I was thinking that he had a doc appt on Monday but because of the holiday it's on tuesday. So that gives us 1 extra day to hopefully gain some weight. Seems like the polycose is mostly out of his system and things are switching back to normal.

Emily has her 1st sleepover tonight. A little girl in her class is having a few of the girls over for a Wii game night with pizza and cake and a sleepover for her birthday. Emily is super excited.

Jace is going to spend the night at his grandparents for some special one on one time. He's pretty excited.

That leaves me at home tonight with the little 3. Well sorta. We have dinner at my parents so that will take up some of our evening. Hopefully they will be ready to head to bed when we get home and Mr E will hopefully be in a good mood and I can have a bit of quiet time this evening. Hoping to get some knitting done. We shall see how it goes.

Home health is back out tomorrow for another weight check. Hoping for some more gain.

Friday, January 15, 2010

Quick Eli updates ***LAB UPDATES***

***docs office called and his labs came back negative. She wants to recheck next week to keep a close eye. So luckily it looks like we bypassed it this time! Also home health came again (they are daily right now) his unofficial weight was 6lbs 15oz. She definitely agreed as well to stop the polycose, which I had already done. As it's getting out of his system he's eating more. So hopefully he will be back to normal nursings tomorrow.***

I'm behind on updates. It's been a busy few days. Wednesday was when Eli had a fever, went to doc and they did a bag catch urinalysis. They thought it looked clear. Called Thursday morning after the 24hr culture and it showed something. So we went in for a cath clean catch yesterday. Waiting on the 24hr culture. Hoping it's not an infection. They put him on the polycose to mix with breastmilk to try and gain weight faster and that's been a disaster. It overly fills him to the point of bloating, so he is spitting up way more, and has been super uncomfortable. Then he is so full he won't eat anymore for hours. We've tried multiple times and adjusted different ways and none of it has worked. Because of all of this he has only gained 1 oz so far this week. His GI doc will definitely not be happy with this news. Hoping to catch up with the rest of today and this weekend.

Everyone else is doing well. No changes with any of the kids. Bob is doing alot better. Still watching what he eats, but other than that all is good.

Wednesday, January 13, 2010

Sit down with the surgeon

What a day. This morning we met with Bob's GI surgeon. She wanted us to come in and talk in person about the biopsy results. She said she wanted to make sure that we 100% understood the severity of the tests. She said that it was moments away from cancer. the composition of the cells were horribly mutated and displaced. She again said over and over how lucky he was that it ha started bleeding and they took it out when they did. She has decided to have his next colonoscopy n 6 months instead of the original 1 year she was thinking. Normally repeat colonoscopies are done every 5 to 10 years. If that tells you how worried she is. Luckily we really like her and trust her and think she's a great doc, since we will apparently be around her a bit! :)

Mr Eli started running a fever about 15 minutes after we got home from Bob's surgeon. Doc had me immediately bring him in. So far urine test looks clear, full results in the morning. The doc is hoping it was from him being bundled up in his carseat and the heater in the car....since he still has so much trouble keeping his own body temp level. It's gone as of now so we are keeping a close eye on him. We also got a prescription today from his doctor for a calorie booster. We will put it into some bottles of expressed breastmilk to give him extra. It's not formula and it's easily digested, made specifically for breastmilk. We are hoping it works as this is a good compromise for us!

Ari had her first IEP mtg today. They said she did beautifully on all of her testing and would like to discuss further what kind of services everyone thinks she needs as she turns 3. We will be having another mtg next week with both teams to talk further.

Jace had tutoring again today. We aren't getting much info from him on what they are doing there. Looks like we will be sending a note to school for some more detailed info. We got report cards last week and he's definitely still struggling.

Emily got her haircut today. It looks very nice! She got her report card as well and did amazing like always, Principals Honor Roll!! She's been doing TKD twice a week still and has now started doing some workout tapes and programs on ON Demand. She's enjoying it and that's what matters!

Benjamin is a mess. He's been getting into everything lately and is pretty exhausting. He's back to refusing to eat anything after lunch, and it's a big fight every day. He's being pretty self destructive and we are having to really keep a close eye and attempt to find safer alternatives for him. His IEP is next week and we are definitely looking forward to sitting down with his team and chatting.

Me...I never quite know what to say about myself. I'm just exhausted. Everything is so hard to deal with. Everytime I turn around it's something new. I'm trying to stay strong for my family, and it's getting harder and harder every day. With Bob being sick, I've had to take on even more and have tried not to worry him and put any extra stress on him. I'm rapidly hitting the point where I need a break, a bit of time outside of the house.

Tuesday, January 12, 2010

Biopsy Results are In

Bob's surgeon called this afternoon. The polyp was not cancer now, but it was 100% guaranteed to have turned cancerous soon. She said he was beyond lucky that it started bleeding and they were able to remove it quickly. We meet with the surgeon tomorrow and he will have colonoscopys yearly. We are thankful that this one hadn't turned into cancer, but are beyond nervous for when the next one comes, and what to expect.

Eli had home health today and they are going to come and weigh him daily until we can figure out the scale situation. So hopefully we will see some good gains between now and Monday.

Jace had tutoring, and now Jace and Emily are at TKD. Ben and Ari are both on an errand with Bob, leaving me and Mr Eli at home. It's super quiet and I LOVE it! I wish I got bits of time like this every day!

Tomorow we have Ari's IEP mtg, not really looking forward to it. IEP mtgs never seem to go quite as planned. The good news is we love her Rainbows team so that should help!

More updates tomorrow once we know more!

Monday, January 11, 2010

update on the men

Updates on the men in my life.
I'll start with Bob. I ended up having to take him to the ER last night. As the days went on he was getting more and more uncomfy. Doc had him do things to try and help and none of them were working. So she finally sent us to the ER last night. The did Xrays and apparently after the colonoscopy his colon had a spot that was kinked or basically temporarily paralized/asleep. So everything he was eating was backing up behind this causing all of the stomach pain. So they basically had him go back thru the colon prep. He had to do that last night and it finally kicked in this morning. Now his stomach is pretty sore and he's obviously quite dehydrated. They have him back on a clear liquid diet and he can slow start adding in the BRAT (bananas, rice, applesauce, and toast) diet once he's past this part. Hopefully that will help this time around. Still waiting on biopsy results.

Onto Mr Eli...He had his appointment with Dr Z this morning, he's GI. We have now found out that our scale is broken. He has actually only gained 4oz this week, which isn't good. She is giving us 1 more week, and then it's looking like the 2 surgeries, the 1 for reflux and the G-tube. We don't know what else to do and where else to adjust. I'm at a complete loss. She suggested trying to replace 1 feeding with formula, but that unto itself will be a huge problem too. We are making phone calls and rushing to try and figure out what the next best move is. Will update more when we know more.

Everyone else is the same. Good. In school. We are trying to keep everyone else's lives as normal as possible. I'm exhausted, past exhausted actually.

Sunday, January 10, 2010

Update on Bob

it's been a long few days. I feel like I say that alot by the way. Bob had his surgical procedure done on Friday. During the colonoscopy they found a very large polyp. She was able to remove it right then. We have to wait until Wednesday probably for the biopsy results. Apparently at some point all colon polyps are cancerous, it just depends on when. This does not mean that his was at this point, but it could be, or it would have been some time down the road. The doc did say that it was a good thing that he came in when he did. Now that he's had one his chances of another are very high. So he will have to have regular checks and such. We will get more info from his GI this coming week. He's been pretty sore afterwards since it had been so many days of no eating, and the blood loss, and fluid loss and such. He's slowly started eating again as his stomach has been pretty sore. Last night he did pretty decent with dinner and wasn't as sore so we will see how today goes!

Eli is doing pretty good. He gained a 1/2 oz on his weigh this morning. That takes us to 6lbs 10oz. So slowly but steadily. Not as much as his doc wanted by monday but we are hoping that it's enough that she will give us another week.

Emily went to the doc on Friday as well. She has a sinus infection, so doc put her on some meds for that. Hopefully they will kick in soon. She's grown quite a bit as well. She was up to 4ft 8in!!! She's in the 90% percentile for height! WOW!

The other 3 are doing well. No changes with them!
More updates tomorrow after Eli's doc appt!

Thursday, January 7, 2010

It never ends

Holy cow it's been a hectic week. Eli had 2 doctors appointments, 2 home health appointments, and 2 rainbows appointments. Bob has had 2 doctors appointments, and a doctors appointment and a procedure tomorrow. Emily has 1 doctors appointment tomorrow. So that makes 10 appointments in 5 days. This is all on top of 2 nights of TKD and 2 afternoons of Tutoring. I'm exhausted beyond belief. I also got a call from Ben's school that we need to have an IEP re-write meeting next week on top of all my regular appointments.
So I'll just start at the bottom and work my way up! :)

Eli~ He's gained 6oz since saturday, and 2.5oz since his Monday doc appointment! He's officially up to 6lbs 8z as of this morning. That's the good news end. The bad news end is he's super fussy and seems pretty uncomfy. If you touch his stomach he fusses and he keeps scrunching up his legs and really fidgety and grouchy. The doc just called and the next thing she wants us to try is me cutting out all caffeine and dairy from my diet. I had dropped down but hadn't completely cut. Caffeine isn't an issue. I hate soda and coffee, but those who know me know DAIRY. HOLY COW. That's my biggy. So yuppers this should be interesting. The next step after that is surgery which she really wants him to be a bit bigger for.

Ari~ Nothing new with little miss. She's been hanging out with me and Mr Eli most of the time. She's decided she now has a place in her heart for legos, not just all things pink and princess. :)

Ben~ He's completely his current IEP goals and his teacher called all excited telling me that we needed to rewrite them. We will all be meeting next week to draw up a new IEP.

Jace~ He started back with TKD this week, and his tutoring. It's kept him pretty darned busy. He's been playing Wii when he doesn't have homework and is having fun figuring out the new Super Mario. So glad the Wii remotes have the wrist strap or we'd have a heck of a time, as he gets so excited!

Emily~ She's got a cold that just won't go away. She's had a cough and loss of voice daily that she can't quite seem to get over. She's heading to the doc tomorrow. She's enjoying TKD as well. This last Tuesday there was a level 7 black belt visiting who taught the class. He told Emily she was doing well, and she was sooo excited!

Bob~ He's not doing so well. Wednesday morning he started passing a larger quantity of blood and blood clots. Started getting light headed and his stomach was really hurting. Went to the doc. She basically put him on bedrest and got him into a GI doc today. They are doing a colonoscopy and biopsies tomorrow. He had xrays of his stomach today. So he's laying low and relaxing as much as possible.

Me~ There really is no me right now. Me is all of the above 6 people. I'm here, I think. Really I'm here, there, and everywhere.

I will update more tomorrow when I know more.

Tuesday, January 5, 2010

Photos...Finally :)


The Bear to the upper left of Eli was made for him by all 4 of his siblings at Build a Bear. Inside the bears tummy it has 4 red hearts from each sibling! :)

I knit Bob 2 special Christmas presents! :)

I knit my mom a table cover for one of her decorative tables.


Doc updates from yesterday

Yesterday Mr Eli had both of his doctors appointments. His Pediatric GI is still super concerned about his growth/weight. He started at the 5th percentile on the charts, dropped to 2nd, and now we are well under 0. He isn't gaining enough steadily, and is still losing alot. He did gain some though, and we are now up to 6lbs 7oz on her scale, and 6lbs 5.5 on our scale. She is giving him 1 more week, until next monday and she wants him somewhere over 7lbs, basically we need to gain over 10oz this week. If not then she wants to discuss the Nissen Fundoplication and a G Tube both of which are obviously surgical procedures that we were originally attempting to avoid. Eli is already eating 12 times a day so adding in additional is virtually impossible. We already push him to the point that he throws up some feedings and we have to back off a bit. He is definitely throwing up less but still is. The prilosec has made a huge difference and we are so happy for that!
In other Eli related news he is 5 weeks old today. He is also really focusing and looking at us, enjoys being talked too, and he has a tickle spot that we found. It's fun to have those slight moments of "real life" with him. Typical newborn things! :)

Emily~ She's doing good. Loving being back at school and super excited for TKD to start back up tonight. She's been writing her own songs lately and is really having fun with it. She's incredibly talented with her writing, and we are encouraging her often. She's been helping out around the house and her favorite thing to do is curl up with Mr Eli while I cook dinner or switch out the laundry!

Jace~ Is also glad to be back in school and is ready for TKD to start back up tonight as well. He also starts back up today and tomorrow with his math and reading tutoring. He's been helping out around the house a bit too and his favorite thing is vacuuming. He's started on a new medication and night and it seems to be helping calm his stomach during the nighttime. We are hoping to see the bad cycles start to become less but we won't know for a while.

Benjamin~ Is of course beyond thrilled to be back in school. He loves the scheduale and structure of being in school. He has been getting into everything and we have to constantly watch him. His speech has really been taking off over the last month and conversation has greatly improved with him! We've definitely enjoyed that one!

Ariana~ She's doing good. She loves to hang out in her room playing with her pony's, barbies, and babies. They are her life! She will be finishing up all of her testing and getting ready to start school in February. We will definitely miss he rainbows therapists, but know we will love her teacher when she starts school, as she'll be with Ben's teacher, just mornings instead of afternoons!

Bob and I are ok. Hanging in like always. I'm exhausted and missing people. We are definitely stressed at the moment with the 1 week "deadline" for Eli to gain massive weight. We are constantly looking to see what we can possibly change to even save a 1/4 of an ounce of weight loss. It's hard.

More updates soon and once I get all the pictures from the last month sorted thru I will get some posted!

Saturday, January 2, 2010

its been a long night and day. mr man didnt sleep great last night and then wanted to sleep all day. he lost weight yesterday so there was a big push today to make sure he was eating enough. his temp is still up a bit for him so still keeping an eye. this evening hes been pretty fussy so im hoping he can get comfortable as the evening goes on. hes definitely throwing up less as weve been on the prilosec for a few days.

im exhausted and lonely. all the stress and such is starting to get to me. ive been having headaches and not sleeping as well as i would like. my body is simply exhausted. something in my life is going to have to give soon.

more soon.

Friday, January 1, 2010

First Update of 2010

Happy New Years everyone!!
Eli lost weight today. He weighed in at 6lbs 1.5oz. His temp has been slightly up today for him, but not fever level yet. We are keeping a close eye on it. He's been a bit sleepier and hasn't eaten quite as well today, but seems to be picking up a bit tonight.
The big kids spent a big portion of the day doing some house stuff. Got all the rooms organized and arrainged, got the last of the christmas decorations put away, and got all the regular pretties and all of those things back out. The house looks super empty, and it's been fun reorganizing all the stuff. The big kids earned some money for their chores so they are happy about that!
I promise to get some pictures posted at the beginning of the week. Things should slightly settle down once all the kids are back in school.
Monday is a busy one. Eli has both his pediatrician and his GI doc and home health for all his labs. Rainbows is also hoping to come back out, and we've got to get his hearing tests schedualed since he had the high dose antibiotics in the hospital. We will update as we work our way thru all of the appointments next week. Hopefully we will have some weight gain again on the scale in the morning!
We just want to again thank everyone for all the prayers and support. We had never expected this last month to be this rough. We are no where near the end, and most days it's harder than it was, but we are getting slightly into a routine. Slightly. We wouldn't be making it without all the support we've received from everyone!! Love to all!