Calm Amongst the Chaos

I will start with Lily who had a neuro appointment yesterday. She weighed in at a whopping 59 lbs! I just had my girls with me and that made the appointment so much more lovely. Love Oli, don’t love Oli in a Dr. office. Lily had a seizure in the parking lot then one drop while seeing neuro and a nice big one on the way home in the van which then caused her to vomit all over herself and her wheelchair and it was so sad because she then just passed out, the ride was 45 minutes 😦 she had to sit with her puke all over her and Andi and I had to roll the windows down.
Neuro decided to go up aggressively on Sabril and Clobzam and hopefully we will be able to discontinue the Banzel. We also decided to replace VNS on the right side. It was originally on the left side, when they went to replace the battery the cords weren’t working so they just removed the battery and closed her. I really think the VNS did help and we want it back in. Neuro said it is perfectly fine to put it on the right side and so we are going to go ahead with that, I am hoping we can do that during spring break.
Lily is still gluten free and except for my diminishing bank account I haven’t seen any changes in her at all. Positive or negative. We will continue for 2 more months and then if we still see no changes she can go back to oatmeal and peanut butter and jelly on real bread. But always willing to try anything for our girl.
I will now move on to Andi who at the Dr the other weighed in at 58 lbs and 50″. She is only a pound less than Lily and about maybe 4 inches shorter. Either Andi is a giant or Lily is really slowing down in growing (probably both). It is nice that she is knowing we have to care for her completely but I can’t help but wonder if it is because of CDKL5, or she just has slowed down. She is quite average for her age and she used to be 100% height and weight for her first 6 years then she really slowed down. Anywho, we are on Andi Jane. She was at the Dr because we are concerned she has ADHD. Her Dr has already voiced his opinion on her last year but now that it is causing a problem in school I want to look into it more in depth. Her teacher has made note of her inability to sit still to an extreme as well as her social issues and staying on task all no bueno. Not sure what our plans will be from diagnosis on, but you can be certain I won’t do anything without doing my research.
And onto our boy. Oliver had his 2 year well check on Monday and came in at a whopping 25 lbs and 36″. He is quite the string bean but I have to say I am glad his 12% and 97% percentiles weren’t the opposite, he’d be an oopalupa. First thing Dr noticed was his raging ear infection in one ear and pretty bad infection in the other. Oops. I knew he wasn’t sleeping well. Just thought it was a cold. Then we go on about vocab. How many words he asks uh.. 10? Maybe 15? Is that ok? Not really he says. He told me not to worry worry, but be concerned and we will follow up with an ear re-check and then some hearing tests. I’m not worried he is autistic, but I am concerned he has fluid in his ears as he did all last year and then when I finally took him to the ENT it was summer and he was all clear. But I am worried he has had fluid for the most part of his little life and his hearing isn’t right. So I guess we will continue to follow up with that and I will continue to update.
I told our pediatrician, I wonder if we had a 4th what the heck he or she would have?!
I call Andrew to tell him this news and he says what the heck is wrong with our kids? My sentiments exactly. So glad we closed up shop. My heart can’t take anymore worry over these precious little people.
If you can spare a prayer for us it would be appreciated. I know I kept the update on the light side, but I do have genuine worry for each of my kids and I know Lily’s is the most severe concern and most life threatening, but I want Andi to do well in school and flourish as an awesome spirited child, not hindered by her overactive brain and we would love to hear Oli say more than hot, truck, football and dada. He is 2 now and he barely says anything clearly let alone puts words together. So pray for our mommy and daddy hearts that fill with worry. Pray for the kids that we make the right choices where all their well beings are concerned. Pray God’s will always takes us where his Grace can protect us.