Well we thought we were going home today.  G is still very wobbly and not talking much but the docs had been telling us it was just a matter of time before he returned to normal, Neurologist was in just now and is concerned he hasn’t returned to baseline.  So were staying at least one more night.  Were bummed, and a little woried now that the neuro is worried.  Keep praying for G.

Chuck

Continued progress for little man. Gabriel has said several words this morning. 🙂 Yesterday he reminded me of my 1 year old sunday school babies in his speech. Occasional words, lots of sounds. Today is much better!

He is also more steady on his feet. Still wobbly and needing help staying steady but walking around and playing trains without huge barriers of pillows. Good progress.

He HATES the cherry flavor in one of the new medicines and will not drink it.  We have had wrapped him in a blanket and syringe it down. (This kid WILL NOT take meds without a HUGE fight).  Minor set back.

The plan is to go home today.

We have officially lost track of the days of the week….but today is Friday. The most important thing I have to say today….is THANK YOU! We are truly blown away by all the love and support coming our way.We have always been big believers in strong relationships and community but now we are convinced that we are functioning because of all the care coming our way.

Gabriel had an MRI this morning and we were told there was nothing of concern :). This is a big relief to us, especially since he hasn’t been talking. He did say “Choo Choo” yesterday and would say the letter sounds when asked. I never imagined how exciting it would be to hear my train obsessed chatterbox say  “Choo Choo”. However after many hours of no words at all…it was AWESOME!  When he woke up this morning Chuck said “What’s my name?” and Gabriel answered “Chuck”…Hee hee…not Daddy, Chuck.

Yesterday was a long day because he feels fine on the inside but his body is so drugged that he can’t talk or move independently.  He has had a total of 5 wires connected to him and they drive him crazy. We finally got to take 4 of the wires off about 4 p.m. so we could put him in a cart thing and get him out of the room. He calmed down immediately once he was in the cart and finally fell asleep for the first time in 18ish hours  (we think). After his nap we woke up played with a Thomas the train set nonstop for 4 hours.

I (Amy) got to take some time away from the hospital yesterday. My sister lives 10 minutes from the hospital so I got to go to her house. Her husband cooked a real meal and I got to play with my niece 15 month Lydia. It was a really nice respite.

We just got admitted to children’s mercy hospital for the 3rd time in as many weeks. Today as been a really tough day. It is 10:00 as I type and Gabriel has had 13 seizures today. Including one the car on the way to the hospital.  He was eating french fries at the time and we couldn’t tell if he was choking or not. So we called 911 and waited on the side of I-35 for the paramedics to come help.  By the time they arrived he was no longer seizing or choking.  The ambulance paramedic was the same woman who had taken care of Gabriel on his first visit to the E.R. on Super Bowl Sunday. She remembered us…because of his hair 🙂

The ambulance got us to the hospital and my mom and dad were able to meet us there and sit with us in the E.R. Gabriel has several more seizures in the E.R. and he has had 1 more since we have been admitted to the room. The plan at this second is to keep trying different drugs and see what controls them.

The worst part about today is that he has not totally recovered from a seizure since early afternoon. He is trying to verbalize but has not been able to talk. The doctors are clearly waiting til tomorrow to see if it is just the drugs because when we ask about it, they ask questions like “has he been walking today””does he know who you are?” “Can he understand?” Thankfully we have been able to answer “yes” to all of those. So we are thinking since are all connected that we will have to wait and see until tomorrow.  He has been using some of his baby sign for things like “More” to communicate…..which is good…..but it was tearing me up having my super verbal baby trying to talk and getting nothing out.

We are hoping and praying for a better tomorrow.

5:08 a.m. …. “SEIZURE!”  Chuck calls out this all too familiar word. Not the way we were hoping to wake up this morning.   Blank! Blank! Blankity! Blank!  At least we know the routine now. Call the neurologist, up his meds, wait and see.  The pattern right now seems to be…new dose, a couple good days (less days each time first time 4 days, then 3, now 2), seizure, call the doctor, up his meds, wait.  I am truly thankful for every moment of good times. I will take 2 days without seizures as a blessing, but we are really hoping for longer and longer periods of time between these episodes that shatter the day.

It felt a little strange to be going to Gabriel’s 3 year well child exam today.  Was it really worth it? We knew he wasn’t “well”.  At the same we wanted to be sure his regular doctor was up to speed on all that has transpired.

Turned out to be an AWESOME visit. First let me say we love our family doctor. He has an incredible bedside manner, really takes time and listens. He is also an avid researcher, learner, teacher. We always leave a visit to his office feeling cared for and knowing something new.

The doctor took lots of notes, asked lots of questions and listened as we gave him the quick rundown of the seizures and medications. Then he looked both Chuck and I in the eye and asked “Now, how are Mom and Dad doing?”  We have been very blessed with great medical professionals throughout this journey, but this is the first time a doctor has truly asked how we are doing. (Not that we felt the other doctors should have, they were treating our child, not us.) He chatted with us, gave us encouraging words, as well as, some simple wisdom, then wrapped up the “seizure” part of our visit.

G had fun playing with the doctor and whizzed through all of his developmental checks and general medical checks.  He was full of energy, being a silly and a little ornery. I made a comment about how the medication seems to be making him a little hyper and more active then usual, even though the side effects warn of possible drowsiness. The doctor commented “I think that is great. I see him acting like a 3 year old boy”. The doctor followed that comment with something to the effect of…maybe his has been in a slight haze until now and this medicine is letting all of him shine. WOW! A whole new perspective on this extra energy I have been annoyed with.  Gonna be a learning curve for Mommy but we will figure it out.  (HA! didn’t mean to go back to the blog name….clearly we say it a lot around here!)