This update will be a bit jumbled as it covers a whole week of information!
Eye Doctor ~ Eli's eyes are looking a bit better! He is going to continue on with the glasses, so we are so happy to be avoiding eye surgery!!! He will recheck in 4 months, the goal is to get to every 6 months but we aren't there yet.
Last KC Trip ~ We came up to KC for 2 appts and ending up being here for 5. We saw his GI and did alot of talking about his feeds and such. He completely agreed that we shouldn't be upping his feeds and that he needs time to adjust to where we are. He wants only 2-3 dirty diapers a day before we even consider going up on feeds. He also wanted the GJ changed to a smaller size as his stoma was horrible irritated from the acid, covered with burns and bleeding. He sent us to have the GJ changed and it's been great since! We also met with hematology twice. They were able to draw all of his labs and do all of his dressing changes. Eli met with preadmissions testing and got all of his info and paperwork done. They will again follow mito procedures for the sedation.
Then home. At home we had PT twice and speech one. He is doing well with PT. She's super happy about him working on crawling.
CP Clinic ~ Eli had his appt at clinic and we met with the orthopedic doc and tons of other people. She wants to wait on braces and will recheck in 3 months. He will be meeting with seating clinic next month to see about getting fitted for his 1st wheelchair.
Late friday evening Eli's PICC line stopped working and was leaking water everywhere. We took him to the local ER. They called KC and adviced us that KC said take it out (it had a large hole in it) and switch the last 3 days of antibiotics to a super strong oral antibiotic. We went home 5 hrs later. We got a call 1st thing monday morning stating that his KC docs wanted an ECHO before just taking it out because of the blood clots. Wichita didn't do this.
We were told that we needed to head up to KC Tuesday for an ECHO. We got here and it was done pretty quickly. Today was Hematology again. The blood clot has gone from 6 x 6 to 4 x 7, so they are calling it smaller, but unsure if it's just a different angle of measurement or what. They have however decided to extend his anticoagulants to atleast 4 months instead of the orginal 3. He also had his labs redrawn today. If his levels are still within therapeutic range then we can switch to drawing every 2 weeks instead of weekly. Tomorrow is Eli's sedation procedures. He's having a bronchoscopy, larygnoscopy, and his ABR. We are excited to finally be getting this done, but super nervous for the results. Tomorrow he will also be meeting with infectious disease to discuss the antibiotics and with nutrition to recheck on feeds. Both just called within the last 10 minutes to add these 2 appts. Go figure.
Next week we will be back in KC, as well as the following week. Alot of appts coming up and alot going on.
This trip in KC is 4 days long. It's Bob and I, with Ari and Eli. Both of the kiddos have done really well. We've spent the early mornings taking Ari out doing things and then afternoons at the hospital, and evenings in the play room of course! :) Ari enjoys the childrens hospital and they have lots of great things in place for siblings.
As always Bob and I are exhausted and have alot on our minds. We are well on the road to making the decisions that we need to make. We don't have alot of options, and they aren't quite what we want but definitely best. We know it will all work out.
The older 3 are doing well. They are busy with school this week. Emily finished up state testing last week and is just getting resituated back in normal class. Jace is still working hard with handwriting and reading. He got 100% on a spelling test last week and was super excited. Benjamin is working on learning to read and they are working hard on sight words. His handwriting is also a struggle with alot of backwards letters and such. We are currently working on his IEP, and it looks like we will end up in mediation for that one. Ari is doing good too. She had her 4th birthday party and got alot of super cool stuff. She got some jewelry, hair pretties, some things for her leapster, and a doll that she can dress up.
As always we are so blessed to have friends and family in our lives who support us every step of the way! You guys all know who you are and we are eternally thankful to have you in our lives!
Here are a few pictures of Ari and Eli today at the underwater kids adventure at Crown Center in KC!