Thursday, May 27, 2010

SOOO behind

I'm so behind on blogging...obviously. It's been a beyond hectic few weeks. I don't even know where to start.

Bob~ He's busy working like always. Right now he's gone 12 hrs a day, 4 days a week. when he is home we are running errands, doc and therapy appts, cleaning house, and trying to in general play catch up, and spend as much time together as a family as possible. His van is no more, so we found a car and bought it. We did test drive it check it out, got all the details, etc. Drove 2 miles and there was an explosion noise and the car died. The man refused to refund. We had to have it towed and it's now at it's 2nd shop. They wires to the engine had been purposefully rigged. Blew all the engine lines and wires that give it power and the master fuse box. We have almost spent more than repairs and tows than on the vehicle. We are suing obviously. So right now we have 1 vehicle, and no money. pretty fun stuff.

Emily~ Has completed 3rd grade, and looking forward to starting back into school hopefully next year. She's doing pretty good. She's still seeing her therapist each week and they are working on boundaries and conversation. If we could just get past the attitude life would be great! :)

Jace~ He's finished 1st grade! So much change has happened in the last few months in our new school district, academically. Other than that he's a mess. He's been hiding one of his stomach meds and refusing to take it, so his stomach has been a mess. His attitude has also been a mess. He's very brutal physically to the other kids and to us. He's always looking to fight, and it's harder and harder to keep up with him physically as he's a big solid boy. I'm exhausted dealing with him, and don't have alot of ideas on where to go next.

Ben~ He's graduated from PreK. It was a tough goodbye on the last day. His teacher for the last 2 years is amazing and will be greatly missed. She cried when saying goodbye to Ben. It was rough for everyone. He's already counting down the days until kindergarten. He's doing much better with his cast. Around the house he is walking decently, and as the day goes on and he starts getting tired he just crawls around with his cast in the air behind him. Out and about he's carried, in a shopping cart, on in his wheelchair. By bedtime he's absolutely exhausted and crashes hard. Right under 3 weeks left until he gets his cast off. We are working on some charting to find out what might be triggering some of his meltdowns and obsessions and freakouts. We meet again on Saturday to see what next.

Ari~ Life is same as always with her. She's the little princess. Her OCD and sensory issues seem to slightly increase with each passing day. Her food aversions are worse than Ben's ever were. She's slowly slimming down, losing the last of her "baby fat". She's still randomly working on potty learning, some days it seems like we are getting there, and ohers not so much. Taking it slow and trying to let her lead the way.

Eli~ He's doing pretty good. Completely over his pneumonia. He had his sedation MRI and did great. Still waiting on the results. They also ran all of his DNA and chromosomal testing, and now we wait 4 weeks for the results. If they find what they are thinking MIGHT be there, then we have an answer for almost everything. If they don't find it, then we are back at square 1; no clue. We don't want either of the above to be the case, if that makes sense. His therapy team will be switching next week. He'll now have OT, PT, speech, and a nutritionist. We are looking forward to meeting his new team and getting started. His doc has again adjusted his feeds trying to get weight gain to resume. We are also going to try and mash up some avocado and mix it with breastmilk and see if we can get it thru the tube.

Me~ Hmmmm. I'm having horrible headaches. It's now so bad I'm waking up with them, and going to sleep with them most days. It starts behind my ears and goes all the way behind my head. Most times it hurts to even touch my head. Everytime I try to get into the doc something happens with one of the kids and I have to rescheduale. I have it set up right now during one of Bob's days off, but her 1st available time was another 3 weeks away. Go figure. It's just another thing on the list of goofy stuff going on with me lately. Not sure if it's the stress and lack of sleep, or what. But something has to give soon. Other than that nothing new with me. I spend every minute of every day keeping up with the kids, the housework, doctors, medical supply companies, nurses, insurance companies, paperwork, inventory, therapies, appts, transportation, cooking, etc...sometimes i even find time to eat 3 meals in one day and pee more than twice a day!

What's coming up for June? HMMM. tons as always. Eli has his recheck with the surgeon, pediatrician checkins, still pushing to get him into the pulmonologist sooner, and his portable bag will be here soon so we can play with his feeds more, and his test results. Ben's got his recheck with his orthopedic surgeon in june, and hopefully the removal of his cast. I have my doc appt. Emily is getting her hair cut off. And who knows what else.

July brings tons to. Eli will have all his appts. We are taking our 1st family vacation with all 7 of us. Bob will be off work for 10-14 days. We are going to Missouri to a wedding, Kansas City for Eli's next testing and check in with his kidney surgeon, then Bob has his next round of testing and his colonoscopy. Fun, busy times. The kids are really looking forward to our vacation and staying in such a large hotel suite. Bob and I aren't quite sure how we feel yet! :)

I promise to keep up better with blogging and updates. I will also get some pics up over this 4 day holiday weekend coming up!

Wednesday, May 19, 2010

Swirled Cast

Ben had his appt with the orthopedic surgeon on Tuesday. He put a cast on, and will have Ben come back in 1 month for a recheck xray. He has a walking boot, but that's slow going. It's awkward for Ben, and a bit sore. He's pretty wobbly with it and falls quite a bit. Also his foot swells pretty quickly. So he's still in his wheelchair anytime he's out of the house, and around the house he's mostly carried or he crawls, and practices walking holding onto things. I'm sure within a week he'll have it figured out!

Tomorrow is Mr Eli's MRI with sedation. We check into the PICU tomorrow morning at 8am. I will update during the day as I can!

Below are 2 pics of Mr Ben's cast. He couldn't pick a color and the cast tech was amazing and they designed quite the cast!

Monday, May 17, 2010

Ben's got Wheels!!!

It's been quite the day. Ben's school wouldn't let him come to school without a wheelchair. They said the lifts were a liability. So he missed school today. His pediatrician is amazing and she was able to get all of the paperwork done and at 7:45 tonight his new wheelchair was delivered. It took a few medical supply companies to find one that was small enough for him. He has already started to figure out how to work the wheels on it. So he's excited to get to go to school tomorrow. He spent most of the day today propped up on the couch watching TV, playing with Pokemon cards, and looking at books. This afternoon he moved to the floor with some Jenga blocks and figured out how to use his arms, good leg, and bottom to slightly scoot around. We went on a walk, and he rode in the stroller, he did ok, but his leg wasn't quite as comfy on the foot rest of the stroller. For now he's in his bed, but wants to move back into our room with us. I'm guessing Bob will have to move him in there tonight again before we head to bed. He's been a bit sore on and off today, but done well.
We go to the orthopedic surgeon in the morning. His normal doc's office doesn't feel comfy treating a break on the growth plate, so the are sending him to a specialist. Not sure if they will do the full cast tomorrow, depends on how the swelling is doing.
Will update more tomorrow.
Here is a pic of Benjamin figuring out how to "drive" on our front porch this evening!

Ben's 1st Broken Bone

What a night. We went to my parents house to cut the boys hair. I decided to do it on the back deck so we didn't have to deal with all the hair inside. The boys were playing and my dad's metal extension ladder fell over and landed on Ben's lower leg/foot. He was screaming and was clearly in pain. He refused to walk and it immediately started swelling. i decided to take him to the ER. He broke the bottom of the leg bone, top of the ankle bone on the growth plate. It was shifted and not lined up the way it should be anymore.
He has a temporary cast right now, and will get his full cast on Wednesday after the swelling has had a chance to subside. He is also completely non-weight bearing. not fun at all. so far he's still sore enough he is ok with that, but for how long, i'm not sure.
Here are a few pictures from his night!

Sunday, May 16, 2010

Sunday afternoon updates

I apologize for the lack of updates. I've gotten multiple phone calls, text messages, and emails. It is sooo nice to know that everyone is still thinking about us and keeping us in their thoughts.
Eli went to the doc each day last week for an antibiotic shot, check in, and feed changes. He's doing quite a bit better, although still really sleepy. He started "oral" antibiotics Saturday, after 3 full shots of super strong antibiotics. Hoping he continues to improve. We call into the doc for our daily check in on Monday and she decides what next. Eli also had the neurologist on Friday. The neurologist doesn't think it's seisures, but thinks he has an idea of what it might be. He told us VERY specifically that he wasn't saying it WAS, but that he definitely wanted to test for it. Eli apparently meets almost ALL of the "criteria", his pediatrician agrees as well. We did some research on it ourselves and sadly Eli does meet all of the criteria. So Eli will be having some more testing. It is all lab work, chromosomal and DNA. It's something that simply happens during growth in utero and not something resulting from any other factors. So we again wait for answers.

The other kids are doing well. Emily has completed her school work, and the boys are in their last week of school. This week they each have field day and a class party. They are super excited for the upcoming week, and summer. Benjamin has already began a summer countdown, telling us how many days are left until he starts kindergarten! :) It's pretty cute!
Jace lost another tooth today. He's quite upset because he can't find it. He was eating an apple and then realized it was gone. He checked everywhere, including the apple core, and when he still couldn't find it, he finally accepts the fact it was most likely swallowed. He needed reassurance that the tooth fairy would understand! :)
Other than that life is same old same old around here. Stress level high, sleep time changes! :) Constantly hoping for a break!
this week will bring multiple checkins with the pediatrician, and the MRI with sedation. Fun stuff. I promise to try and keep up with the updates this week. also hopefully get some new pictures of the kids up.

Thursday, May 13, 2010

Morning Update

Eli had a goofy temp night. He started off the evening with a fever, and then in the middle of the night his temp was majorly low. He rested decently last night and we just kept pumping him full of pedialyte. This morning he decided he wasn't thrilled and wanted to nurse. My poor little man. He's coughing a bit this morning, and super tired. he was awake for maybe 20 minutes and is now crashed in his bed again.
We got his new "portable" pump on Monday, yet it is sooo not portable. the bag still has to be above the pump, and they are still the huge 1000ml which is very hard to rig. AND it has no portable bag to carry all of it in. So we have attempted to rig a bag this morning, but it's definitely not ideal. the insurance company is seeing what they can find, and in the mean time we will probably have to switch to the spare backup for going out today. Such a mess.
Eli has his checkin at the doctor at 2pm today. Chest xray, antibiotic shot, and full check. Hopefully we will get some good news that things are improving and maybe we can start adding some feeds back in. We figured it up and right now Eli is getting 32oz of pedialyte every 24hrs, and in 34 oz of pedialyte there is only 100 calories. that's horrible. like holy cow horrible. So hoping to get back to full feeds quickly. we have his pedialyte running on continuous at 40cc/hr. we tried 30cc/hr but he wasn't having any wet diapers. With upping it he is having some but not alot.
more updates this afternoon.

Wednesday, May 12, 2010

Pneumonia **Update 7:21pm

Eli has full blown bad pneumonia. The bottom of his right lung is full. they did antibiotic shots.
we are home and trying to get Eli situated. His surgeon has put him on 24/7 continuous feeds of pedialyte, taken him off milk, breathing treatments every 3 hours, chest xrays and antibiotic shots every 24 hours, all his docs on call, and ready to direct admit when/if needed. His nurse is here and will be checking vit...als continuously all evening. His heartrate is high right now, so watching. updates as we know.

**Update 7:21pm
just got off the phone with the Dr. Eli's heartrate is HIGH. So she's stopping his breathing treatments because she's afraid it's making it higher. his poor nurse can hardly count fast enough to even get an accurate "read". He's not peeing yet with the pedialyte so he's got under an hour to have a wet dipe, or it's gotta go up quite a bit. HUMPH. I HATE the torture my poor boy has to go thru with being sick.

Beginning of the week updates

Sunday ended up being a pretty decent day. The kids and I hung out and did a pretty simple dinner. I even got some knitting done!!!

Monday was a fun spring kansas day. We had storms and tornados and all that fun stuff. The kids got to the their blankets and pillows and get under the stairs and everything. They were excited and scared all at the same time. They thought the tornado was coming straight towards us but luckily at the last minute it shifted! We spent quite a bit of time downstairs that night with all of the storms.

Tuesday was nice! In the morning Ben and I went and checked out his new school. his teacher and speech path met us there and we took a tour and some pictures. After that did a touch of housework and furniture rearragning. THEN just me! I spent the afternoon out away from the kids and housework and all of those things. I hung out with a friend and had lunch and visited. Then I came home and cooked my dad's birthday dinner and cake! We had dinner with my parents. I went to the movies for the evening with a friend as well. It was sooo nice and sooo needed to have a quite relaxing day just being me! I loved it!

Wednesday. So far not so amazing. Mr Eli had a bit of a cough yesterday and by last night he was coughing and choking and grunting a bit. By this morning alot. Called the doc. She's having us do breathing treatments every 3 hrs and he goes in to see her this afernoon. Not sure what's going on with him but he's not super thrilled. Hopefully they can figure it out quickly and we can get everything adjusted.
Will update once we are home from the doc!

Sunday, May 9, 2010

Happy Mothers Day!!!

It seems like we just had mothers day and here it is again! Time if flying. Last mothers day we had just found out that I was pregnant. We were still in shock at this point last year. Now my littlest man is 5 months old already. WOW.
These last few months, the end of pregnancy knowing that Eli was going to be sick, and these months since his birth, have showed me a whole new side of being a mother. I now have even more respect (if that's even possible) for mothers, especially mothers of sick children. It's more than I could have ever imagined.
I've been told so many times over the last 5 months how amazing of a mother and woman I am. How strong I am. Lately it's not been a matter of being strong, it's a matter of survival, honestly.
I hope and pray that by Mothers Day of 2011, I can simply say all is well. I hope I can kick back and enjoy the day with ALL being happy and healthy. But until that time, I will treasure and be thankful for all the little things, for all the blessings that come with being a mother.
Happy Mother's Day to all!!!!

Tuesday, May 4, 2010

Cardiologist Update

This morning was Eli's EKG, ECHO, and appt with the cardiologist. The entire office staff was great, and we were able to get everything done in 2 hrs! We were super impressed. His EKG looks good. The ECHO showed that the PFA had completely disappeared which is super good. The PFO is still there, but he says it's small enough but he doesn't think that's what causing the breathing and fluid issues. He did say that Eli has a heart murmer which we didn't know. He says for now he will redo all of the testing in 1 year, unless something changes.
So the good news is the heart issues aren't what is causing the problems, and the bad news is we stil aren't sure what's causing the problems. Back to the drawing board.
Eli is testing free (unless he gets sick) until May 20th. So hopefully we will get a bit of a break!

Monday, May 3, 2010

Behind Again

I apologize for constantly falling behind on updates. Life just slips by. Eli's EEG update came back ok, so we wait for the next round of testing. He has his EKG and ECHO this Tuesday. Hoping for some good information then. He's been on a goofy scheduale lately and it's really starting to affect him, and us. Hoping we can figure it out soon.

Friday we ran some errands, had a few appointments, and a family evening. We had some friends over for dinner, then attempted to watch a movie. All of the kids were bouncing off the walls so we walked down to the park and let them play. They all had a great time.

Saturday was our lazy day. We took the kids to a local super nice park and they played for quite a while. then home for a touch of cleaning and then NOTHING. It was nice! We played wii, watched a bit of TV, knit, played outside, talked etc.. We ate dinner, then headed downstairs for games with the kids. It was nice to spend a whole day doing nothing together as a family.

Sunday the older 4 had church, and Eli and I hung out at home and ran errands with his nurse. The kids got home and the little 2 napped and the big 2 rode bikes and played outside with the neighbor kids. The little 2 went outside as well after nap. Ben was so tired after playing outside for 2 hours that he almost fell asleep at the dinner table. He was so cute! i was able to get the main body of my lace shawl done yesterday as well!!!

today is school and laundry for me! Hoping to have a fairly low key day around here. We'll see how that goes on account of the fact that Mr Eli is awake AGAIN and not in the best of moods.

I will update tomorrow after his appt with the cardiologist.