Wow time flies when your….lacking serious sleep? I can’t believe its been well over a month since I posted last. Yeesh sorry guys. You all should be thankful though because I barely survived RAGBRAI this year so you could be not getting an update at all ;) “You rode RAGBRAI?” you ask? Uh….NO! When I say I barely survived I mean the week by myself without Adam taking care of a sassy 3 yr old and two 18 month olds hitting their terrible two’s early and teething at the same time. People that had the misfortune of running into me that week can attest to the hot mess I was. Bags under my eyes, barely combed hair, walking around with Jacob’s banana from breakfast smeared on my shirt…it was frightening to say the least. I'm not proud of it, but at one point I texted Adam and said “Don’t call me, don’t text me, our children are spawns of Satan today, and I in NO WAY want to hear about your ‘awesome vacation.’” He apparently did not get the message as he called me later that night but by the time he called I had somewhat recovered from my mental breakdown that I welcomed the call ;)
BIG thanks to Uncle Seann and Aunt Wendy for rescuing me during my mental breakdown on the day our nurse didn’t come in. I welcomed the reprieve of them taking the boys to go get pizza…15 minutes of silence was bliss. Granted I tried to lay down with Braden and take a nap with him and he thought it would be more fun to take his purple plastic monkey and sock me in my eye socket giving me a black eye. <<sigh>> I can’t win for losing some days.
I will get the medical mumbo jumbo out the way before I post pictures of all we have been up to this last month. Braden had an EEG 2 weeks ago at Mercy to check for any seizure activity. We received a call a week later and said it looked great and to start weaning him off his seizure meds. So far so good, as of this Monday he will be completely off! HOORAY! I really shouldn’t complain, we are VERY fortunate that Braden is on very little medication but once this is gone he will just be on the albuterol neb treatments as needed :)
He also had a follow up with Dr. Menesez in IC to discuss his cervical spine. The Xrays (as always) did not show anything that could decipher how his spine is doing so we are scheduled to go back in 6 weeks, have him sedated, and do a complete CT scan of his spine. This will hopefully show us what’s going on with his C-spine, determine how bad his scoliosis is, and FINALLY see if his hips are in their sockets! He also had a follow up with ENT and they are ordering a trache that is 2mm longer to see if we can get past the small bit of tracheolmalaysia just past the end of his trache. He will need to be admitted to Mercy for the day so they can monitor him and see if he tolerates it. (Girls-we will let you know the day…I know he would love to see his girlfriends)
As you can guess since I haven't mentioned it yet, his cleft palate surgery was postponed. About 2 days before he was due to have surgery, he came down with a 99-100F fever and his lungs were super cruddy (no discolored secretions, just couldn’t get a handle on them.) I called IC Thursday and the surgeon herself called and spoke with me. She thanked me for calling in and said we made the right call to postpone. She said with tons of secretions and being put under anesthesia, we would be begging for pneumonia and a PICU stay. His surgery, as of right now, has been rescheduled for Oct. 18.
Now onto some good news about how the boys are progressing. Both Braden and Jacob are signing a few words and are really starting to comprehend what we ask them. Jacob can respond/react to simple commands and is even coming to tell us when he wants his diaper changed (I see potty training in my near future but SHHH don’t tell him!). He also can say quite a few words now (Juice, Bus, Shoes, Bra-da (brother), Bay-ee (Bailey-our dog), Da-da, Ma-ma, Ball, Ba-doon (Balloon), cheese). Braden can sign a few things as well (Mom, dad, All Clean, More, Play, Yes, No, Stop, Ball, Surprise, and All Done). We are working on teaching him “Ouch” in hopes he can tell us when something hurts. He is also rolling a lot more (albeit he rolled over on his own the other day and pulled his trache out…whoops!) and he is yelling up a storm. His new favorite song is “Head, Shoulders, knees, and toes” and he will point to the body parts and he tries to get his feet but his meaty thighs get in the way ;)
Evan is…well…Evan. He is a 3 year old boy with the mouth of a 16 year old girl. He is so sassy and clearly needs his hearing checked as it takes me at LEAST 5 times to tell him to do something before he even acknowledges that I'm speaking to him. He also only responds to yelling…which is frustrating as I'm trying to be more patient and not yell….the optimum word here is “trying.” I'm failing miserably there by the way! His new favorite animal is the Beaver and edges it into everything he says and does…which can be very awkward. For example, Me-“Evan, are those mosquito bites all over your underwear line?” Evan-“don’t worry about that mom, they don’t itch, they are beaver footprints.” Um…what?! He also told me the other day that he can say “grasshole” because “grasshole isn't a bad word.” I responded with “WHAT?!?!?!” because I of course thought he said something else until he informed me that a “grasshole is where a rabbit lives…duh mom!” Oy Vey-I'm in trouble with this one! I'm sure it is serious payback for my sarcasm and smart mouth growing up!
Ok so I think that about wraps it up…now on to some pictures. The boys and I have been very busy lately. We took a trip to the zoo wit Aunt Wendy when daddy was on RAGBRAI. It was so fun but it was SUPER hot and Jacob peed on me twice. Also it was my grandpa Boesen’s 80th birthday so we went back, hung out at Gma and Gpa Byersdorfer’s house, and celebrated with family. What an awesome time!
Did I mention he gives great hugs?
Aunt Shelly and Phil came and kept us company the week daddy was on RAGBRAI. The boys sure do love their cousin. We trained Aunt Shelly to suction and feed Braden. She did a great job and even suctioned him on her own while I was up taking a shower! Phil even helped suction Braden as well and helped me burp and feed him. He did awesome understanding and helping! Not bad for a 6 year old! A future RT in the making!
The boys and I at the Blank Park Zoo. Evan informed me he wasn’t scared of the dinosaurs because “duh mom they are robots!” The boys LOVED the train ride and about clawed my skin off trying to climb me when we went into the dark tunnel! It was WAY too hot for Braden so we let the boys pick out a stuffed animal for him. Its his new best friend!
Below is when one of his favorite night nurses from the NICU came to visit him…apparently no one clued him in that she just got married because he was flirting like crazy right in front of her new husband…it was so embarrassing ;)
These are some random fun times had at the Byersdorfer’s….
The boys had an awesome time visiting family for great Gpa’s 80th bday! Evan went for a motorcycle ride, the boys swung at Papa Boesen’s playground, and got to meet a ton of family! Have I ever mentioned how much I LOVE the way little kids react to Braden? They are so innocent, curious, and accepting. It just warms my heart answering their questions and watch their reactions to him. All you see if acceptance and love and I can only hope that his brothers will react the same way when they encounter any other children or adults with special needs!
Today the boys, Aunt Wendy and I braved the Straw Poll’s crazy drivers/parkers at Hilton and went to Reiman Gardens because, ever since we went in May, Evan asks to go every day! Maybe the butterflies were a-buzz with political frenziness too because they were zooming in and out of us in the garden and Jacob was going nuts! I have a really cute video of him chasing butterflies and screeching like crazy. They also still have the BIG BUG exhibit so of course we HAD to see the “sticky spiders.” Of course once we got up close Evan was a little leery thinking they were real. He did whisper to me that the spider told him “his spidey senses were tingling”…OH Evan…what am I to do with you????