Updates and Photos

Sorry for the big delay on updates. We've had a busy few days. I seem to be having a heck of a time with allergies or a cold, not quite sure which one but either way it hasn't been any fun. Bob has been busy working.
Emily is working away with homeschooling. She's loving it and we are sooo happy that we all made the choice that we did. She begins her counseling this week. She went to a birthday party today, and had a chance to spend some time with one of her friends from her old school. She is finally able to go brace free and is loving having full use of her hand and arm again!
Jace is doing well with school, and enjoying making some new friends. He went to a birthday party this weekend, and that gave him a chance to get to know his new classmates even more.
Benjamin had a field trip last week so he was at school for a full 6 hours. He was exhausted when he got home but he definitely had fun. They are getting him an emergency appt with a psychologist. We should be getting in next week they are hoping, his waiver worker had to get all of the proper referrals and paperwork. They are also considering doing a crisis application with Ben to help get him some additional services quicker. Also looking into some weight blankets/vests, and possibly a cocoon swing. Hoping to find out more details on all of that this next week.
Ariana is doing good. She's working on figuring out how to get her pants on and off and get herself on and off the potty. She's loving being miss independant. We cleaned up her room a bit and got all of her dollhouse, pony's and barbies organized. She has spent the last few days in there almost constantly playing with them.
Eli has been a mess the last few days. He cries and cries. Nobody is quite sure why. His nurse and I were chatting today and we think he might be teething. Hoping to get some teething tablets tomorrow and see if that helps. His morning weight today was 9lbs 14.6oz!!! Getting so big. Looks like we might just meet our goal of 10lbs by Easter!!! today he was quite unhappy and looked oh so cute. I of course took some photos. Here they are Many Faces of Eli
Bob and I had our 1st date night in 6 months. We went to a local fundraiser called Death by Chocolate. It was sooooo yummy. It was fun dressing up, eating tons of yummy chocolate, watching the fashion show, listening to music, and talking uninterrupted!
Below are some pictures of Bob and I from our night out and then the last photos of my children this evening heading to bed!

Quick Updates

It's been a long few days. My wonderful ex has decided to be an absolute pain in the ass and has spent the last 2 days harrassing and threatening me. He has said every single horrible thing he can think of and threatened everything he can think of. It's been ridiculous and out of control. It's been a very exhausting few days dealing with it. Hopefully he will leave me alone.

In other more important news. Mr eli has his recheck with the surgeon yesterday. He's still not on the growth chart yet. He's gaining but not as much as she'd like. She is wanting us to start adding vegetable oil to his breastmilk during his night pump feeds. Calories calories calories. I joked and told her if he ever has bad cholesterol we know it's her fault. She laughed and said that Mr Eli can only aspire to have bad cholesterol. LOL. Other than that she says he looks good and he goes back in a month.

Jace is doing well in school. He's really liking his new teacher and his new classroom. We have noticed the difference in the "layout" of the work, and he's really having to work to catch up with the new school districts curriculm.

Emily is doing great with homeschooling. She's really enjoying the challenge. We are doing a full course load. English, math, social studies, science, PE, art, and music. As well as an added life skills lesson. She's having fun and doing really well!

Benjamin is enjoying being back in school. Today he had a full day at school because they went on a field trip. They went to exploration place and had a weather day. Learning about spring storms, weather tracking, and all of those fun things. He really enjoyed it.

Ariana is doing well. She's working some more on pottying and I'm really hoping to get pushing with it more. I think once I'm committed 100% she'll just run right into it with no problem.

Bob is working. It's been busy the last few, as the end of the month always seems to be. He's looking forward to a few days off when we go to KC the beginning of April.
I'm feeling a bit better as my antibiotics seem to be kicking in. My sinuses have been miserable so that's not been fun. Looking forward to the root canal so this can all be over with. Sounds strange but true.

more updates soon.

Blah kind of day

I didn't make it to the Y today. I had woken up yesterday with my face swelled a bit. Called the dentist and he put me on antibiotics. Woke up this morning and I could hardly open and close my left eye fully, and my entire left side was swelled horribly. Dentist got me in. I apparently have an infected tooth that has spread up into the tissue of my face. So I will need a root canal but he can't until the swelling goes down. So I'm stuck miserable and swollen. FUN. NOT!!! So I didn't have the energy to go to the Y. Tomorrow night is yoga so I will be there!

Today was also Emily's 1st day of homeschool. She did well. I think it's going to work out perfectly. Jace started his new school today as well and loved it. He made some new friends and was super happy! No changes in schooling for Mr Ben!

Eli lost almost 3oz yesterday. I'm not sure what happened, but we will definitely be keeping an eye on that. He goes to his surgeon tomorrow afternoon for his next after surgery check in. More updates after that!

Hospital Preperations

It's coming soooo fast. Our next hospital journey begins 2 weeks from today. It's been sooooo surreal being at home for a month now. It's been almost like having a normal life. But then today I started realizing that I have to get organized and ready and packed and everything situated. Eli's nurse and I were chatting about travelling with a sick special needs baby and HOLY COW. We both began listing all of the things that we will need to pack and take and haul in and set up, and adjustments and changes for travel accomodations and all of those things. This is our 1st trip traveling out of city with Eli. The amount of things we will have to pack is overwhelming. We won't have his medical supply store right at hand, his nurses, his normal doctors, his extras, nothing. We have to pack for every possible scenario. I got the hotel booked this evening. I was able to get a nice hospital rate at an amazing hotel within eyesight of the hospital. They were able to get us a large king room, with a fridge in room(gotta keep his milk and meds cold), and I checked to verify they have generators and all that just in case of a power outage. So the pump should be good there. They have parking, and valet/concierge services to help get all of the things to and from the room. Next I need to call the insurance, medical supplies, medical equipment, nurses, doctors, pharmacy, and his PT/OT/Speech. Then I need to count medical supplies, organize and pack medical supplies, figure out a way to rig his pump in the van so he can have his evening feeds on time, get his complete chart and contact info together, pack his stuff, and hopefully fit a few Bob and my stuff in the van as well. :)

I'm just freaking out about getting all of this packed. So many things go thru my mind...If his mickey falls out, if the balloon gets a leak, if his pump has an issue, if the battery runs out on the drive there, if one of his bags has a hole, if we lose one of his $66 bottles, losing a syringe, taking enough 2 by 2's, meds, etc....

and none of the above fears even begin to list all of the fears about what the testing will find this time. Every single time it's been worse than the time before. I can't keep doing worse much longer. This is a whole new team we have briefly spoken to but never met. We won't have our doctors, nurses, therapists, nothing. We don't know these people, how they work, and how they will be with Eli or us. i know that might sound strange but over the last 4 months we have worked to hand pick each and every person that is part of Eli's medical team. And his team is amazing, if I do say so myself! :)

I just want to stay home curled up with my little man and pretend like this is all over. Pretend like there are no surgeries ahead of us, no more pain and torture, no more medical anything.

I would have never expected my life to be like this. So medical, so organized, so structured, so disconnected. I miss just having a baby, just holding a baby. I miss being able to enjoy his smile for a smile, not having to log it in my mind on a neurological milestone chart. I miss nursing without thinking about how many times he's eating, how many times I've pumped and how many ounces are in the fridge currently awaiting the pump tonight. I miss propping him against me, tummy to tummy, and not having to adjust him 10 times to make sure that pressure isn't being put on his Mic-key. I miss a bedroom full of JUST clothes and sheets. mine is full of pumps, tubes, syringes, drain sponges, pads, stethscopes, thermometers, urine catch bags, specimin cups, medications, lotions, creams, mic-keys, HUGE scales, charts/logs, etc... My nights are filled with the clicking of his feeding tube, the beeps as it's empty or kinked, the warming and refilling, the pumping, the crying baby, the cleaning of tubes, etc... I just want to curl up with my son and sleep.

I don't mean this to sound like a pity party...I just needed to vent and like always my blog is the place for me to do this. I wouldn't change Eli for the whole world. I love him more than words could ever describe. I'm just tired and not ready to start the next phase of our journey. I need more time...not that it would help............

Below is a picture of my little man from yesterday. Today's official weight was 9lbs 12.4oz.

Saturday Workout

Today was day 4 at the Y.
8/9 mile walk 1/9 mile jog ~ 17 minutes
15 min recumbent bike 3 miles
1 hr intermediate yoga

Today was the 1st time I've done yoga since right before my surgery. I wasn't sure how it would go since my muscles are still so darned tight. I could definitely feel how tight I was but I was able to do everything and even did a few of the extras that she suggested. I will definitely be going back!!!
I'll be taking tomorrow off, and continue with the 6 days a week!

Now hoping to unpack the office and go thru the summer clothes! Not that today looks very summery but I want to go thru it all and get rid of what won't fit. Fun stuff.

Friday's Workout

Today was day 3 at the gym, and we were able to go together so the time went so much faster!!!
1 8/9 miles walking and 1/9 mile running in 34 minutes.
Arm/upper body machines.
1 mile cool down walk.

I lost 1 1/2 lbs yesterday!!!! Super excited.

Work out Log

I've decided to keep a workout log on here! I need somewhere to be accountable too! :) Yesterday was my 1st day back at the gym in over 1 1/2 years. With it also being Mr Eli's 1st time we decided to simply walk the track so we could leave quickly if needed! We will continue to do that for a week or two, to make sure they are comfortable with his care!
This pregnancy I gained almost 50 lbs and so far I've only lost 15 lbs. With all of the stress I've not gained, but not lost.

Tuesday: Walked 2 miles, ran 1/9th of a mile
Wednesday: walked 2 miles in 35 minutes

I've discovered that my incisions still are a mess and the nerves are still firing all goofy. The pain from trying to run was still strong, so I'm going to slowly try and add that in and see if over time the muscles and nerves calm down a bit.

"Normal"

We are slowly working towards getting our life situated and back to "normal", or atleast whatever normal is for us. Eli is finally in cloth diapers. It took some growing and then lots of working finding the perfect diaper that would work well with his Mic-Key and would be easy for the nurses to use. After tons of looking and questions on message boards and such we settled on the Gro Baby System So far we are loving it. We have a mix of the washable inserts and the throw-away liners. It's nice to be back to cloth diapering. We also just got our Ergo in today and our Beco will be shipping by the end of the week. We aren't sure which will work best for Eli so we chatted with the owner of the website and she has a 365 day money back guarantee so we have decided to try both!! We've tried the Ergo for a few minutes today when it arrived but then he decided he was hungry, and is now happily enjoying his mobile. I can't wait to try it out some more later this afternoon!
In other Eli news...He's up to 9lbs 10.2oz at this mornings weigh-in. No change to the night feedings yet. He isn't seeming like he's ready so we aren't pushing. After his swelling the other day they ran tons of lab work. All came back clear, including the full kidney profile, so Dr H isn't sure what's going on. We'll just keep watching him and check back in with her in 1 1/2 wks.

Princess Ari is back to potty learning. She's doing pretty well, but at the stage where she has to be reminded very often or she'll forget. She so badly wants to wear her big girl underwear. i'm hoping she will figure it out pretty quickly.

Benjamin is same as always. We met with his worker yesterday and she gave us some information to try and get him into a behavioral psycologist. We are going to be making some calls on that and hoping to get a good working plan in place. We have tried with the unpacking to keep everything behind lock and key and are working to find solutions that he can have. We bought the entire color wonder system...markers, books, blank paper, stamps, finger paints, and brush paints. So we are hoping that helps him, since he will have something of his own that he can use without supervision. It seems that no matter what we do or how hard we try to Benjamin proof everything he still finds a way. Just now as i was blogging I heard a strange noise. he had taken Ari's wall hanging and ripped it apart and all of the beads flew all over his room. Humph. It's exhausting.

Jace and Emily are well. they are on spring break this week, and are actually enjoying it and staying busy. our local rec center has spring break activities and we signed them up for the week. games, arts and crafts, sports, field trips, etc. they are having fun and making new friends!

Bob and I are same as always. Making it thru each day. We finally joined the Y, and today was our 1st day to get to go. We are hoping to get involved in some more activities there for the kids and for us. Our night out is coming up soon and we can't wait! His suit is getting it's final alterations, and all I have left is to pick out some jewelry! We are looking forward to dressing up and having a night out alone. This will be our 1st date night since early/mid November!
The house is mostly unpacked...all that's left is the office boxes, which I absolutely hate going thru and unpacking. So many papers and so much stuff. hoping to have it all done by the weekend though. We got the garage finished and organized and we were able to get the storage and the bikes and wagons and strollers all in the 3rd car stall and we are BOTH able to park in the garage! YIPPPEEE! that has definitely been nice!

More updates soon!

Time keeps flying by

life has been hectic. beyond hectic.

Eli~ my little man is doing well. He weighed in at 9lbs 6oz this morning. :) He's growing and doing so good with his eating. He's been fighting sleep alot which makes him pretty fussy. we are really pushing the therapies with him right now. Alot of tummy time, grasping and holding things, stimulation and conversation, etc.. He saw his doc last week and she's a bit concerned with a few things. First he isn't making any sounds at all. Even when he cries it's silent until he's REALLY angry and then there is a sound, other than that nothing. He doesn't smile, and doesn't focus and track that way she would like. He also has gotten so used to always being on his left side that he won't look to his right and the left side of his head is slightly flat. The left is the side he doesn't choke on so it's been the preferred way of laying him and feeding him. his neck muscles are tight on the right so she's really wanting us to push with working on that as well. Everyone has been doing a great job of immediately implementing everything and we are hoping to see some changes for the positive soon. His nurses are finally situated as well. We have 3 nurses now. 1 of them is here twice a week, 1 once a week, and 1 is here 4 times a week. We've gotten to be good friends with all of his nurses and we all work well together as a team.

this morning Emily and Jace got baptised at church. They did a great job (jace did get a bit scared but did well) and we are both so proud of them. Emily also got her cast off last week and is now in a brace. She can take that off in 2 weeks and go back to normal life. She's definitely ready! Jace has been pushing it a bit with his food choices and has paid for it a bit with upset stomachs. He also forgets his meds sometimes and this obviously doesn't help matters at all. all 3 of the older kids are on spring break this week. Hoping to find some activities to help keep them busy and not so bored. Benjamin is just Benjamin. He's always into something and needs constant watching. We bought him some Color Wonder markers and paper and I'm looking forward to trying them out with him this week. Hoping it helps when he can have something without an adult hanging over him constantly. Ariana is the same little princess she has always been. She's got quite the little attitude and usually has no problems holding her own with her siblings!

Bob and I. We've been busy unpacking. He's getting a touch of time off work here and there the last few days during slow times and it's really helped us get situated quickly. We have a few pictures and shelves left to hang, and a few office boxes to unpack but other than that we are done!!!! I've been getting a little crocheting done but nothing major. Right now I'm currently working on a floor blanket for Mr eli.

I will get pictures up this week as the kids will all actually be around for me to get some good pics!

Comments

Here's how comments work on my blog just so everyone knows...if you don't have the balls to sign the name to your insults it won't be posted publicly on my blog. I'm glad someone out there seems to enjoy harrassing and attempting to cause trouble, but why don't you step up and actually take ownership for what you are saying/doing.

to everyone else who knows how to use comments we thank you!

Grouchy Little Man

Mr Eli is grumpy. He's been super fussy lately and wanting held constantly. He nurses frequently at times, and then no at all at other times. It's a constant juggling act to keep his feedings consistent and enough. We've changed is night feedings from 35cc/hr X 8 hrs to 40cc/hr X 8hrs. We are hoping that will help level him out a bit during the day. Right now I'm scrambling to find a baby carrier that won't smash his Mickey and will allow me to be completely hands free and get things done. There are so many carriers out there and it's so hard to know. Put out a call to all of my amazing friends so hopefully we can try some out and find out what works! He has gained a bit of weight. This morning he was 9lbs 5oz, BUT we don't think this was an accurate weight. He'd just come off the tube and that is a HUGE increase from the day before, almost a 5oz increase which is probably not right. We'll weigh again before bed and then again in the morning to get a better idea.

The older kids are doing good. Emily just finished up her state assessments and did so well she's getting a certificate from the principal today. She gets her cast off next week and is super excited about this as well. Jace is also doing good. He lost another tooth, which takes us to 3 missing currently from his mouth. :) The older 2 are on spring break next week and are looking forward to it. Benjamin has been on break this week for parent teacher conferences, and has spring break next week. He's starting to struggle in a few areas academically, so these are things we'll really have to work on and watch so he doesn't fall behind. Ariana is doing well. She's busy as always being a princess! :)
Bob is working, same old same old there. I'm home working on unpacking and taking care of the kids. Nothing new and exciting there either!
Photos soon!

Moved In

Well we are completely moved in, but definitely not done unpacking. :( It's been a long few days, and a few more long ones to come. We don't have cable or internet yet as their first available install wasn't until March 19th. Soooo the kids are already bored without it, and I'm missing the internet a bit!

Eli has done well with the move, much better than expected. He has gained some more weight!! 9lbs 0.2oz this morning! So another pound marker we've passed! The continuous night feeds seem to really be the key!

The older 4 are doing well. Busy unpacking and exploring the new house. We can't wait for Friday night to have our 1st family movie night in our new huge family room! Bob's back at work, and I'm home unpacking. Fun stuff.

Updates will be sporadic as they are hard to do from my phone, and I'm not always at a house with internet access! Will update as I can!

Behind on updates

i'm sorry I'm so darned behind. it's been an incredibly busy week. We've spent the week packing. The movers will be here at 8am tomorrow morning. It's been hectic to say the least. Everyone is doing well.
Mr Eli was up to 8lbs 14.2oz this morning. ALSO he laughed. I tickled his neck while changing his diaper and have laughed. It was his cute tiny little giggle. My little man is getting so big. He did some modified tummy time with his nurse this evening and also worked on holding toys in his hands and opening his fingers up wide.
the other kids are doing well! School has been busy this week for Emily as it's been state testing.
Bob's been working, and i've been packing. not much exciting to report at all. I will update as I can, but the next few days will be sporadic with the move. updates and pictures coming soon!

Day of 3's for Mr Eli

My little man had a day of 3's. Today he is 3 months old, weighed 8lbs 11.6oz, and was 19inches long. At birth he was 5lbs 11.6 oz, and 16 inches long. So at 3 months old he gained 3 pounds and grew 3 inches since birth! :)
He's had an on and off kind of day. He's spent some time happy and some time screaming. He fought sleep for quite a bit this afternoon, but his nurse was finally able to get him to dose off while I was cooking!
The older 4 have been a disaster today. fighting and screaming and breaking beds. Not fun at all.
We are getting to finally experience bob's new work scheduale this week and we are definitely looking forward to it. He works 2 days, then off 1 day, then works 2 days, then off 2 days! This last Saturday was his 1st Saturday off in 7 months and it was oh so nice! We spent the whole day together as a family! Almost forgot what it was like to have a saturday off! so nonetheless tomorrow is his 1 day off so we are looking forward to that mid week break! And the getting off at 9pm instead of 11pm has been oh so nice as well. We actually get a bit of unwind time at night, and get to bed a little bit earlier.
I'm pretty good. I've spent the entire day packing. I got quite a bit done, and once Bob is here tomorrow we can get even more done together!
More updates soon!