We have been home from the hospital for a full week now. With all the activity going on around here “Full” is the correct word for sure. Gabriel has had TONS of wonderful moments! Lots of great talking, interacting, playing during the day. Several adults who see him regularly have commented on how great he is doing 🙂 It has nice to have others see him on good days too. Evenings have been a different story. On Wednesday and Thursday night he had long, violent seizures. Both of them kept going after we used the emergency medication, so we called 911 both evenings. Both times the seizure had ended just as the crews arrived (which is amazing because we call 5 or 6 minutes into the seizure). Both times all his vitals and oxygen great. So we refused transport, which is a fancy way to say ….. we stayed home. 🙂 All of the professional have been wonderful and kind…each time they keep saying call us when you need us, we will come back, if you need us tonight call again.

TRAINS! TRAINS! TRAINS! Our kid LOVES trains and one of the reasons he loves the hospital, is that they always have trains for him to play with. There was one little problem in this visit. The floor we were staying on had tons of thomas trains but the tracks had been lost (taken home by the last user). Our fantastic nurse used her connections and borrowed some tracks from another floor. G was in heaven!

Of course we had to wear our new superman cape while playing trains!

We couldn’t let the hospital have a thomas train play box without tracks, so we used one of our target gift cards from Christmas and bought a new set of tracks…with tunnel of course!

Gabriel tested the new set out and it worked great! So exciting to think about the other kids who will have a happier stay at the hospital playing with a familiar toy.

We are very glad to have had many moments of JOY in our lives the last week, we pray that everyone reading this has experienced JOY recently too!

Gabriel is having a fantastic day! His large motor skills are firing on all cylinders for the first time in months! He is very talkative and engaged. While eating his pancake this morning he asked Chuck to sit down next to him at the table and then Gabriel engaged in his best 3 year old give and take conversation. He has been running around, wrestling, dancing and sweeping.

We got to come home from the hospital on Friday. He has done nothing but improve since then . He is regularly asking to eat and saying “I’m hungry”. It is a really big deal that he is asking for food since it is often a huge battle just to get him to eat. He continues to eat pancakes, pizza, puffs, chocolate, cheese and pickles and cupcakes (big variety for him).

Last night he ran around the sears outlet for at least 30 minutes,without his helmet on, checking out every refrigerator and oven. (Big box stores can be especially unnerving because every square inch seems dangerous especially if he were to suddenly fall). It was very fun to watch him pretending to cook, eat and then refrigerate pizzas 😉 I giggled to myself a bit realizing that his pizzas are always on his mind.

The doses on 2 of his 3 medications have been raised. He usually has several good days after a raise in medication. We are hopeful to have a longer honeymoon period than a few days..but we will take whatever we get. He is testing his boundaries and being pretty ornery the last few days as well. I was really annoyed to be going back through the “no biting mommy”, “no riding on the cat” for what felt like the 10th time, when I remembered each time this one medication is upped this behavior emerges. While these ornery behaviors are annoying they come hand in hand with lots of good stuff. So instead of being annoyed I refocused and celebrated that he is doing well, his brain is firing, his body is remembering, relearning and discovery new things.

As I am typing Gabriel and Chuck are in an ambulance going to Children’s Mercy for the 2nd time in 2 days. They are on the way now because Gabriel had a 9 minute full seizure. We gave emergency meds after 5, called ambulance. When they arrived 5 minutes later the seizure had slowed significantly and the emergency med seemed to be working as Gabriel was very sleepy. Tonights seizure were nothing compared to last night, so at this point I expect they will be home in a couple hours and I will take over Gabriel duty so Chuck can rest.

Last night Gabriel had a seizure that started at 12:30 and lasted almost 30 minutes. It was a full seizure that stayed active for about 8 minutes then slowed down a bit to consistent rhythmic hand, mouth and face ticks. We were taken the ER by ambulance, they drew some blood and monitored him. They gave us the choice to go home or stay in the ER and possibly be admitted for monitoring when a bed opened. Initially we had planned on going that route in hopes of seeing Gabriel’s doctor in the morning. A few hours later a different doctor came in and explained that we may or may not get to see Gabriel’s doctor if we stayed. She said it was fine it we stayed and that a prolonged seizure as scary even to seasoned parents like overselves but that staying would mean they are just essentially just monitoring him, not making longer term plans. We decided it was best to stay away from the germs and got home as most people’s alarm clocks were going off.

I really appreciated the doctor’s compassion in saying that even for seasoned parents a prolonged seizure is scary…..because it really was. I was in a NyQuil haze through the whole evening…I had not slept well for many nights and wanted a good nights sleep before heading to work with my preschoolers……and even though I felt calm…I kept thinking…this could be really bad….this could be really bad. It was so nice to be in the hospital ER room knowing that there medical professionals right there if we needed them. They kept coming in and saying how sorry they were that we had to wait in such an uncomfortable room. I did not care at all because I felt safe and that my boy could get help if he needed. The feeling of helplessness when the seizures won’t stop is almost unbearable at times. Especially since G is such a strong kid and does all he can to fight through them. I am deeply thankful for the medical personal out there who serve the weak and wounded.

Gabriel’s life right now is full of highs and lows. If you had seen him early today you would not have guessed that he had been in the ER last night or that he would heading there again right now. He had a really good morning, was very talkive and played tons! My parents came down around 1:00 to give Chuck and I some rest time since we had been awake in the ER all night. Gabriel played nonstop with them all afternoon! He got a little woobly and started having his little tremory seizures in late afternoon and they progressed throughout the evening. We did not insist that he slow down and take a nap because he was playing so happily. Chuck and I went out to dinner to celebrate his 40th birthday (We are officially calling a DO OVER on his birthday this year) and as we were pulling into the drive way my Dad called to say that G was 2 minutes into a seizure

That’s the story for now. 🙂

Specifics prayers at this point would be:

1. For the effects of the antibiotic to wear off (they are causing this round of crazy)2. For Gabriel to eat and sleep in a good pattern.
3. For his body to stay in Ketosis (this stops seizures).

4. For rest, not just sleep but rest for all of us! 🙂

I went to Curves this morning to workout and God met me there. I usually go in the evening but knew I wouldn’t make it tonight, so I went this morning instead. While I was working out I started chatting with a nice woman named Penny. She was saying she spends about 2 hours a day in intercessory prayer, that she has a list and prays for each person on her list by name. As she was saying this I was thinking, I should ask her to pray for us. We chatted about a variety of things, I talked about how my son has epilepsy and we go to lots of doctors appointments,etc. As she was leaving, she asked my son’s name. I told her Gabriel. Her face lit up and she said “I am already praying for him! but I had that his Mom’s name was Liz”. At this point I remembered a day this summer when a woman Liz and I were talking about our children on hard to follow diets, her daugther has diabetes. Penny was there that day as well and asked us our names as well as our kids names and told us, she would be praying for us! It was amazing to realized that one of God’s saints has been faithful…and I mean with a capital “F”–Faithful in praying for us. Penny touched my heart and soul in so many ways. She even commented on how glad she was that we had met and that it must have been God’ plan because she almost always workouts out a different time. 🙂 Go God…. sending us both there at his appointed time, not in our schedule but his.

I am glad to get to write a happy blog, The last several weeks have not been great for little G. He of course, is still wonderful and so strong but between being sick and the follow up seizures it has been tough. I had to miss work this week on Thursday and I hate feeling like I am letting people down. It looks there is a good chance we will end up at the E.R. tonight to get a medication load. After months of several days in a row with tons of seizures, Chuck called the doctors office again today and asked very specific questions. Once we asked the questions in the right way we have a new clear plan for days like this. If 3 seizures in 30 minutes use emergency meds, if seizures start again go to ER for medication load to stop the seizures. So glad to finally have a plan and pretty annoyed that it took 6 times of Gabriel’s little body going through this before there was a plan in place. I tend to be passive with the medical stuff, just listen to what they say and do it. Gabriel is very lucky to have a daddy, who is truly his advocate and asks questions until he is sure the medical team understands what is happening.

Right after I typed this we decided to take Gabriel to the ER…he had many more seizures after we used the emergency meds. Chuck took Gabriel to the ER and I stayed home to cook. Yep, that our is crazy life. I actually stayed home to cook meals instead of going the ER. If he had been admitted we didn’t have enough food to take to the hospital. So we followed directions and took him the ER.  Just like several months ago, they did nothing, had no record of the plan from g’s docotor, and suggested changing his meds(chuck said everyone was very very nice). Sigh…frustrating. Gabriel, however, had a great time as the hospital, as always.  They let him play Thomas, he watched YO Gabba Gabba, played with PawPaw (my dad, who came to help) and even asked for a mask 😉

I wanted to share one of my favorite new songs. Speaks to feeling tired and worn out yet hopeful for better times. It is so identifiable no matter what stresses are going on life. Click on the link below. I am not good enough at blogging yet to get the video just to show on the page.

My favorite new song

The last couple weeks have been interesting. I was really looking forward to a couple weeks off work to have some downtime. I had big hopes of potty training, play dates and a totally organized house. Instead we had a great Christmas, then 3 days of tons of seizures, followed by big fevers, dead nerves in teeth and a very sleepy kid. As of today Gabriel has been either having seizures, sleeping 22 hours a day or fighting a fever and cough for a full week.

When I heard this song…I thought that is exactly how I feel! I am just worn. So strange to me that I am feeling this way now after slowing down and recoup time. I think we have been running in such a nonstop adrenline frenzy that I didn’t realize how deeply depleated I was internally. I knew I was physically exhausted and tired all the time. It has been strangely cathartic to have the time to finally process internal thoughts and emotions instead of just rushing from one thing to the other.