Thursday, April 29, 2010

EEG done

Eli had his EEG yesterday. He did really well. They were only able to use 16 of the electrodes since his head is so tiny! He didn't like having the markings done and all of the electrodes put on, but then they let him nurse for the test and he did really well. He only tried to stretch a few times but other than that stayed really still, so no sedation needed! He was so sleepy when it was over the tech had no problems getting all of the electrodes removed. He has his MRI on Tuesday so then we will get full results. That one is a guaranteed sedation. Not looking forward to that at all.
This morning little man has a slightly elevated temp, but nothing to call doc about yet, but watching. He is a bit fussy so we will see how his day goes. He lost weight again last night, but still up a bit in general from last week.

The other kids are doing well. Busy with school. Jace has made some huge advancements since changing school district. We knew that we had moved to a better district but didn't expect this huge of an increase. His teacher is really impressed! He's even reading short chapter books! Benjamin is on his final countdown. His teacher has really been pushing him alot on turning 5 and on kindergarten and the changes he will be facing next year. We know he's hearing it all but I'm not sure if he really gets what we are saying. I think next year will be really tough on him. Emily is finishing up her school work here at home, and has almost completed the work for the year. She's doing well with her counseling and has definitely been gaining some confidence. We all really agree that this was the best choice for Emily. Ari is the princess as always! She is also beginning to learn to write. She's working on her name right now and is doing pretty good copying what we write! "A" is her favorite letter.

Bob is working as always. He's gone 4 days a week for 12 hrs a day. His days home are pretty busy. Not much changes there.
I'm same as always. I've lost another 2 lbs, but seem to be stuck again. Probably doesn't help that I can't seem to consistently get to the Y. I'm working on my lace project still and making some progress! I'm really enjoying it and can't wait to see this one completed and start on some harder chart patterns! Tonight is knitting night again and I'm really looking forward to it.

Lastly the fence is done. YIPPPEEEE! The kids are loving it and so are we!

Wednesday, April 28, 2010

Quick Check In

The last few days haven't been much of anything. Monday was just getting thru the day. Bob worked and Eli's nurses was sick so it was just me and the 5 kids. We didn't do a whole heck of a lot!
Tuesday Bob was off so we ran some errands with the kids and such. We baked some banana bread and had breakfast for dinner. A favorite of all in my house! We did hear back from Eli's doc yesterday and all of the chromosomal testing came back good. So they were happy about that.
Today Mr Eli has his EEG. We check in at 2:15 and they are hoping to start around 2:30. Hoping he cooperates because if he doesn't this is another test that will have to be done with sedation, and with Eli that's something that we always try to avoid.
The kids are down to less than a month of school left. I'm sooo ready for summer break and so are they! It will be nice to not have to drive everyone all over the place every day and to get to actually spend some time at home!
Other than that not much new going on. Same stuff, different day. I will update today after his EEG.

Sunday, April 25, 2010

Busy but good 4 days

Wow it's been a busy few days.
Thursday~ I went to my knitting night without having to spend 2 hours driving everyone everywhere. It was the sitters 1st night AND eli had his nurse. I had an amazingly relaxing time!!! I am learning lace knitting and greatly enjoyed myself!
Friday~We ran errands in the morning. Then the SRS lady came and spoke to Bob and finished up her investigation. She is finding ALL of the claims completely unsubstantiated and if his dumb ass tries to file more false complaints they will go directly to her and she advised us to continue to file a police report for each one, which we will obviously do. THEN we went on DATE NIGHT!!! It was our sitters 2nd night AND again Eli had his nurse. We had 6 glorious hours! We went out to dinner, shopping at lowes, out to a movie, out for some super yummy dessert, and then did our grocery shopping kid free! When we got home all 5 kids were asleep! It was super nice and relaxing! Can't wait to get to do this again in 2 weeks!
Saturday~We had homemade Belgium waffles for breakfast. After breakfast Bob took the 4 older kids out birthday shopping for me and I relaxed at home working on my lace knitting! We all met back up for lunch together as a family, then put on swim suits and headed out. We spent 2 hours at the Y pool. The kids had a blast. Jace and Emily went on the big slide by themselves with no problem. The little 2 played on the kids slide and practiced floating and holding their breath under water. Ben did amazing, as well as Ari! Their 1st time to not freak out at a pool! We all came home, cleaned up, and headed to my parents for a birthday BBQ. I got some great gifts and had a nice time! My parents kept the older 4 since they all had church 1st thing this morning.
Bob and I headed home with little man and got some SLEEP!!!
Sunday~We had a nice morning quietly together with Mr Eli before Bob headed off for work. This morning bob went to head for work and his tire was completely flat. I ran him to work and he took a long lunch and we were able to go get it fixed. The kids and I have spent a quiet evening at home working on a secret project and hanging out.
All in all it's been a good few days. We've spent alot of time hanging out as a family and it was really needed before heading into this next week. We have alot of appointments and testing coming up this week, and everyone will be in full swing again with school and work! fun times!
we will update this week as we get some info from all of the testing and such!

Thursday, April 22, 2010

Dumb People

Well the SRS lady just called me again. My ex is seriously one of the dumbest people out there. He is now trying to file complaints against me for not allowing him to supposedly speak to the children or see them. My address, phone number, email address, and all contact information has NOT changed. He quit paying and calling, and he never visits anyway because he says the trip is to expensive. That's on him, not me. The SRS lady says it's ridiculous and she refuses to investigage it. She's coming out friday to see our fence and it's all done. She thinks this is ridiculous as well. Any new complaints will go directly to her and she's not thrilled with how the system is being abused, same as us.
All because he doesn't want to pay...pathetic.

He Reached!!!!

Mr Eli reached out and touched a toy a few times under his play gym this morning! This was a huge accomplishment for him! Now if he can continue doing this and start working towards grasping things in his hands! Now he's under his play gym 85% asleep. Apparently reaching for toys is exhausting work! :)

Wednesday, April 21, 2010

Eli appt update

Eli had his checkin with his surgeon yesterday. She said his mickey looked great, which we already knew! :) She's not super thrilled about the fact that he's been losing weight over the last 2 weeks. This started when his breathing started getting really bad at night. She's going to push the pulmonologist to get Eli in sooner. She also wants to add extra calories to his feeds. She wants us to add a substance into the breastmilk to add calories. It's a prescription, can't remember what it's called. She also wants his feeds increased to 10 hrs at night instead of 8. She is also going to be trying to get us a new pump, a portable one that we can just throw over our shoulder in a carry bag and take with us so he can get extra calories and feeds that way as well. The nurse and doc were shocked that we've made it almost 5 months with nothing but breastmilk! :) I was very proud of this fact and VERY thankful! If it wasn't for our friends supplying us with extra milk in the beginning and TONS of remedies to increase my milk and TONS of support we wouldn't be where we are! I'm currently pumping 13 to 14 oz a day and am barely ahead of his daily needs of pumped milk! BUT I still have milk in the freezer from all of our amazing friends as we go thru this next phase of increasing my pumping demands again! We have been SOOOOO blessed!
Eli also had OT this last week. She is impressed with the work we've done with his hands and so happy with his tracking as well! She's a bit worried about his legs and feet and showed us some exercises to start doing there! She is going to have PT come out and look at his feet and see what she would like us to do extra! She's also going to be having speech come out for another check in/evaluation. He is still barely making any noises. Sometimes it almost looks like he is trying to but he just can't get them out. He is definitely more interested in watching our mouth when we talk to him, so we are hoping with time he'll figure it out!

Everyone else is doing well! Ben is on an all day field trip today. Jace also has a special day today as a travelling play is coming to his school for a performance. The girls are having a quiet rainy day today at home! I'm trying to motivate myself to get some housework done! Bob is working. My mom is taking the girls and I out for lunch today to celebrate my birthday so that will be a nice break in my day.

more updates and pics soon!

Monday, April 19, 2010

Workout and "concerned citizen"

Today was NOT an amazing workout. I was getting ready to leave for the Y, when Eli's OT called saying she had a last minute opening and would be at our place in 1 hour. So workout cancelled and home I was. I ran Ben to school and then ran to the Y 4 hours late. It was a mess. My leg had sharp pains in it and I just wasn't with the workout. I got right under 4 miles in between the track, treadmill, and bike. It is better than nothing but just not what I had hoped for.

Also to answer some questions that have come up. The fence was schedualed to be put in from the moment we 1st looked at our house. It was signed into our lease long before a stupid citizen called SRS. I have signed proof of that. SRS was told that the moment she came and she logged that. So the concerned citizen ass hole can shove it and leave me and MY children alone.

Sunday, April 18, 2010

Weekly check-in

Quick Weekly Check In!

Eli~ Eli's cough has been getting worse and worse. they aren't sure what is going on. His eye also started acting up and he had to go on eye drops. As of right now they have all but 1 of his tests schedualed. EEG, EKG, ECHO, xray, and we are waiting on the MRI with sedation to be schedualed. Tests begin next week. He will also be meeting with the cardiologist, neurologist, and pulmonologist. Hoping to get some answers soon. He's lost some weight and can't seem to get it back. He's at 10lb 4.5oz right now.

Ari~ She's doing well. She's really showing an interest in potty learning so we are hoping to get switched over to underwear this next week. Worked for the others so we will see how she does as well! Other than that she's super busy playing with her barbies, pony's and tinkerbell!

Ben~ He's busy finishing out the school year. We are working on his kindergarten enrollment and getting all of his IEP's transferred over. He has had 2 of his meetings so far with a team who will help figure out what resources Ben needs and help us find them. We are looking forward to the next meeting where we begin to plan some things out. He has a big field trip coming up this next week so it will be a 7 hr school day for him. We will see how he does.

Jace~ He's doing well. Struggling still a bit with some of his academics at school. Speech has met with him to get all of that restarted. He's super excited to finally be drinking milk! We have switched over to raw milk and he seems to be doing great with it! He thought it was so fun to go out to the farm and see all of the animals and get gallons of raw milk right there and get to come home and actualy drink it! He's still on all of his meds and probably always will be.

Emily~ She's doing well with her school work. She just completed Tom Sawyer and wrote a 4 page book report! She is going to be moving on to Huck Finn! She's had 2 counseling sessions so far and goes back this week as well. Right now she is going weekly. She seems to like her counselor and that's a huge plus. She's already given us some great ideas, so hoping to continue strong!

Bob~ He's busy working, working, working. That's pretty much what he does. He greatly enjoys his 3 days off each week, even though they seem to go soooo fast! We spend as much time together as a family on those 3 days as we possibly can!

Me~ I've been working out, TONS. I'm loving it and so excited with everything I'm accomplishing! I've lost 8lbs in the last week and a half so I'm super excited about that! Other than that just trying to keep up with the house and kids and all of that. My birthday is coming up on Wednesday, and I can't believe that another year has already flown by.

The fence will be finished next weekend. After they expanded the back run they don't have enough materials to finish it all. They have the front and side strip almost done, still working on it right now. The last side strip will be all that is left! The kids are loving the huge backyard and are outside constantly!

More updates during the week as Eli has all of his testing and appointments and such.

Saturday, April 17, 2010

Another Great workout

1 mile track warm up/cool down split.
1.25 miles on the treadmill. 1 mile in 15:21 the walking was 3 to 3.3 mph and I did 6- 1 min runs 1 at 5.5mph and 5 at 5.3mph. then walked the .25miles at 3mph.
4.03mph on the bike in 20.

so i got in a total of 6.28miles today!!!

Friday, April 16, 2010

Great Workout

I got in 6 miles total at the Y today.
I split my 1 mile warm up and cool down on the track.
1.15 miles on the treadmill. my 1 mile was 15min 35seconds, walked at 3.3 and ran at 5.3 for 5- 1 minute runs!!!! then walked the .15 for a cool down.
Then we did 3.45 miles on the bike. The Y got brand new bikes yesterday and HOLY COW. They are brutal. It was definitely quite the workout!
I'm soooo happy with my runs advancing so nicely and my time dropping! I will have no problem meeting my goal of 1 mile by July 24th!!!

Now for Ben's kindergarten enrollment!

Wednesday, April 14, 2010

My Fence

Here are the pictures to prove that my back yard now has a fence seperating it from the railroad tracks. What is even funner is my kids are playing outside in said back yard and I'm taking the photos ALSO proving how they are supervised. HAHAHA.
the side strips and front will be finished this weekend! We can't wait!
as you can see I have changed my blog background to help celebrate my rubbing it in someones face, oh wait I meant to help celebrate the fence. :)

Good Workout!

Today was a good Y workout. I've been out for almost a week with Mr Eli struggling. So I wasn't sure how today would go.
I split a mile on the track for my warm up/cool down.
Then I did 1 mile on the treadmill in 17 minutes. 3 to 3.5mph for the walking and then 3- 1 minute jogs at 5mph.
Then 4.15 miles on the bike in 20 minutes.

We are discussing a new workout scheduale so that I can get to the Y more consistently without having to worry about taking Eli. We shall see how that goes!

Now for some errands after taking Ben to school. Going to get glass bottles for freezing breastmilk and clear plastic BPA free bottles for fridge. Fun stuff. Also have to run to walmart for a few odds and ends. I soooo hate errands!

Quick Eli Update

Yesterday Mr Eli woke up with a fever again and was definitely not feeling well. The doc decided to treat with some tylenol and wait and see. They are thinking that as the new pulmicort is loosening up everything in his lungs, that might be what is causing the fever. It did go down well after the tylenol but he was still very fussy all day. Didn't want a bottle at all, and wanted to nurse alot, but didn't eat alot. For other nursing moms, you know what I mean! He was pretty grumpy all day, but slept decently last night. He's still asleep this morning, so we will see.
He goes in next week for his MRI and chest xray. Then on the 28th he has an EEG, and then will be meeting with the neurologist. They also have an appt schedualed with the pulmonologist. So many new doctors. Definitely interested to see the results from the MRI and EEG. Will be calling the cardiologist today to get his ECHO and EKG schedualed hopefully in the next week or two.
Everyone else is same old same old. Nothing much new! more updates soon.

***Almost forgot one of the most important pieces of news. The back fence is up. You can't get to the train tracks AT ALL. no way no how. It's a super tall privacy fence!!! The sides will be put up this weekend. Pictures for proof will follow. That ends this public service announcement.***

Monday, April 12, 2010

Home for the moment

Eli got discharged around 11pm last night. They docs and nurses all love us and know that we know what to watch for and how to take care of Eli, so they discharged us late last night so we could be home! He had a doc appt 1st thing for labs and a checkin. His labs have come down a bit. She is now adding a neurologist and a pulmonologist to Eli's team of specialists. He will also be having another chest xray this week and frequently after to try and get 1 clear xray to use as a baseline. all of these will be done at the hospital as they have better capabilities. They are also going to do the sedation MRI. One of his doctors is actually going to come and do the sedation. They feel more comfortable doing it that way, with all of Eli's problems. So they are getting all of that schedualed and I should hear back within an hour on when we are headed up for all of that. His doc has also now added pulmicort to his albuteral and we will see if that makes any difference. His kidney panel came back looking good, and the initial urine tests looks good, waiting on the full culture by morning. They can't figure out what's going on and why Eli constnantly has fluid in his lungs. Hopefully we will start getting some answers soon. In the mean time little man isn't thrilled. he was up alot last night coughing and gagging and choking. Both arms and both feet are all bruised up from all of the lab work and IV's and he's just in general exhausted. Heck so am I. I'm going to try and get a few things done here at the house while I wait for the doc, but motivation is seriously lacking.
More updates as we get them.

Sunday, April 11, 2010

Quick Evening Update

Eli is finally resting. They tried the MRI and he was terrified of the noises. He will have to be sedated for the test. We were all really hoping to not have to do any sedation but no such luck. His lab work came back and it's 3 pages long. Almost every single thing on it is either high or low. I don't understand it all. Still waiting on his urine analysis. The doc will still be in this evening so I can get some details.
He was super fussy this evening and his coughing and gagging and choking has started up as well, so that hasn't helped. His oxygen has dropped to the low 90's, and his heart rate has been pretty high. His temp was at 99.5 about 2 hours ago.
More info as I know it.

Pics and Eli back in the hospital

First here are some new pictures taken by my friend, an AMAZING photographer!
Family Pictures

Secondly Eli is in the hospital. We were admitted this morning. He has had this night cough that has progressively gotten worse, to the point he was coughing and choking and gagging last night. This morning he woke up with 101.6 fever. Doc immediately had us bring him in. There is again fluid in his lungs. They admitted him immediately. Waiting for some lab work, and they are hoping to do an MRI today. We don't know much, but will update when we know more!

Friday, April 9, 2010

What a freaking day

My Thought for the Day:
**wishes the world was flat and that some people would accidentally step right off the edge.**

With that being said...
My ex is continuing on his path to earning an award for being the crappiest person EVER on the face of this freaking planet. I cashed his child support check like i have for the last 2 months AS AGREED. He promised that he would ALWAYS allow the checks to clear. Well 9 days later the money is taken back out of my account causing TONS of shit to bounce because I had used the child support to pay some of the childrens bills. So now that $250 child support check has cost me $505. I'm so freaking pissed. I have no clue how the hell he expects me to take care of the children when he pulls that kind of bullshit. Guess Jace won't be getting new shoes this weekend after all.

In other news....Mr Eli as been on the nebulizer for 2 nights now. It seems to be helping some but not completely. After 2 trips to the doc office, 2 labs, and 4 sticks they finally got his lab work drawn up yesterday. Now we wait 2 weeks for the results. YUCKY.
Emily is doing well. Working away on school work and also getting situated in her workouts at the Y. She really enjoys it and did a great job yesterday.
Jace is doing well in school also. His new school has a different way of doing things and it seems to work alot better for him. We think the curriculm and his teacher will be very good for him.
Benjamin is same old same old. Never know from moment to moment how he will be. We are getting all of his paperwork situated for starting kindergarten next year and will be having an IEP mtg soon. We are also meeting with some people today to try and set up a behavioral plan for Ben. Hoping to get some good tips and suggestions.
Ari is the same as always. Little miss princess!

Tonight is the circus with Rainbows. We were able to go last year as well and the kids really enjoyed it! Looking forward to getting to go this year as a family!

Wednesday, April 7, 2010

So Many Updates....Where to Start

I have quite a few updates to get typed up today. I'm not quite sure where to start! I will start with the "juicy drama" update and move from there.
A few of you know about this already, most of you don't. Connie broke up with Brian. To quote her "I'm exhausted....constantly needing to teach him to become a parent." There are sooo many more things that have been said BUT out of respect for everyone involved I won't post anymore of them publicly on my blog. Basically he was lazy, slept in all the time, never wanted to help with the house or the kids, only did the minimal when forced, etc, etc, etc...Does this sound familiar to any of my dear friends out there who used to listen to me vent??? He is apparently causing her a decent bit of grief, go figure. I spent years trying to help him become a husband and a father and it didn't work. She spent over a year and it didn't work. HMMMMMM. That's all I have to say on this one!

Next onto updates that matter! :) Mr Eli. We went to KC and had all of his testing and meetings with the doc. He had a rough time with his 1st test, the biophysical kidney profile. It took them 5 tries to get the IV in. My little man is all bruised up. His kidney took on the fluid but wouldn't let go of it. It just kept filling. Halfway thru the study they gave him some lasix, and his kidney then began to empty some of the fluid. The doctor thinks that is maybe not an obstruction but a problem with the "well" where the fluid empties from the kidney. he described it as filling a small dixie cup(normal kidney) or a huge drum(eli's kidney). the kidney just keeps taking on fluid and never "overflows". He also said that he can only feel 1 of Eli's testicles and that it is 100% guaranteed that it will not drop on it's own and that Eli will be guaranteed surgery soon to repair. On the kidney he's just not quite sure. He wants to run more tests and he's 50/50 right now on if surgery will be what we'll do. He has changed Eli's antibiotics and now anytime it's suspected that Eli has a kidney infection he has to have a supra pubic stick instead of a catheter. This is where they will use ultrasound and stick a needle thru his stomach straight into his kidney and/or bladder. This is the cleanest catch possible. Doesn't sound fun. He is also reluctant to do surgery right now as Eli is just starting to gain weight and such. He wants us back the end of July for some more testing and to make a firm decision from there. So we wait AGAIN.

While we were gone Eli started getting very congested at night and coughing to the point he was waking up choking and having trouble catching his breath. He had a touch of this before we left, and we thought he was getting a cold. But it's only happening at night and is getting worse. He went to his pediatrician today and she did nasal swabs, lab work, and has lowered his night feedings to 30cc/hr times 8 hrs and has started him on nebulizer treatments. He will get them every 4 hrs at night time. She is going to have us call and check in right now on a daily basis so we can make sure that he's not losing weight. For most people losing 10cc/hr isn't anything (30cc are in an ounce for those who are unsure) but for Eli that's a huge amount. that's 80cc a night, which is almost 3 oz. So we want to keep a close eye on his weight. They did 2 tries on the lab work today and weren't able to get it apparently. They had to draw with a butterfly IV. So I have to take little man back in tomorrow so they can try again.

The older 4 are doing well. We spent a family day together on Saturday at Tanganyka Wildlife Park. It was sooo much fun! This Friday we will all be going to the circus. They were able to go last year as well and had so much fun! This year Bob is actually off work and gets to join us as well!
Other than that not much new. Just trying to get resituated after being out of town. The rest of this week will just be getting all of Eli's new meds/feeds adjusted, getting our nursing scheduale resituated and getting the house cleaned up and organized! We will also be getting our fence put up this weekend! Happy about that!

I will try and get some new pics posted soon!

Sunday, April 4, 2010

Friday, April 2, 2010

i hate stupid people

Just to make this clear to those who don't know EVERYTHING. I have done nothing wrong and the police, SRS, and everyone else agree. They are required to check out all cases of child neglect/abuse.
And so everyone is also clear. if we all remember like a year and a half ago in iowa guess who was turned into DHS for CHILD ABUSE. That's right folks. It was brian. His own son reported him to the schools for physically abusing him. His son said that Brian threw him into a door causing him to hit his eye and end up bruised. Did Brian do this? i don't know. he says he didn't. He is the only one who knows for sure. So i find it interesting that he now thinks calling SRS on me because I'm homeschooling is ok. God knows i'm not the only parent who home schools. SRS thought it was funny that he tried to turn me in for it, the police thought it was downright fucking hilarious. so do the nurses who are in my home 7freaking days a week for over 50 hours a week.
some people are such pieces of shit. lol

Thursday, April 1, 2010


Police called per suggestion. Reports/case filed. Suggested that I get a restraining order tomorrow. The kids are very upset. The oldest 2 got into it with their father via text msg this evening. I thought about stopping them, BUT allowed them to discuss it with him as long as they were respectful of the fact that he is still their father. I'm tired of sheltering them and always covering for him, allowing them to always think beautiful smelling roses of Brian. It's such crap. They can discuss with him freely as they would like. Emily is 9 years old and has her own opinions and voice and I will forever encourage her to be her own woman and think and speak for herself! Jace is my super protective mama's boy and was all roughed and toughed up and ready to rumble. He was sooooo cute! I felt so proud of my little man. Totally melted my heart!
I will end with my facebook status update as it sums it all up....

"raging tooth infection pain. CHECK. horrible day with SRS/police/exhusband. CHECK. cranky kids. CHECK. Missing Stitch and Bitch. CHECK. amazing friend who ditches Stitch and Bitch to come hang out with me and above cranky kids AND brings me a huge chocolate milkshake. CHECK. I feel so blessed! :)"


I have never F#cking hated someone more in her life than i do right now. i'm so upset and so angry that i can't stop shaking. i don't know if i should scream or cry or pound my head into the wall. i sooooo can't deal with this.
my piece of fucking shit exhusband called srs on me because he's mad at me cause he has to pay child support. 1st he told them i was homeschooling. they told him that's legal and they don't investigate. so he came up with a lie so they would. he told them i allow my children to play outside unsupervised. so now i'm being investigated. they are going to my childrens schools and everything.
as most of you know he's threatened and harrassed me since i moved here in january of 2009. i have had to call the police on him multiple times and have a stack of case numbers against him. he is angry at me so he's doing this crap to try and make my life miserable. he's mad because i'm homeschooling. so he called them originally about that. they refused to investigate for homeschooling which is legal so he made up a bullshit story about them playing outside in our yard unsupervised.
now emily is crying and incredibly upset because she's now not allowed to go outside and play. she's upset that her father is ruining her life and she says he's supposed to love her and clearly he doesn't. this is all directly from her mouth. she says she doesn't want to speak to him or see him again.
i don't know what to do. actually i do. file a restraining order tomorrow at the local court house. i'm done with the abuse and harrassment.
i told the srs lady that he was abusing the system and she told me what needed to be done to get him in trouble for that and i will be doing that as well.