Updates and good things

Good morning friends,

I'm sorry I haven't updated this for awhile.  I was a bit emotionally worn from the hospital stay.

I think last time I updated Josiah was in the hospital and we had taken him OFF Topamax but hadn't figured out a new med for him.  Well, we did figure out two new meds, and I am very happy.

We started him on Phenobarbital, just the regular run of the mill, used forever seizure medicine, and I am really happy with it.  I like the tried and true myself.  :)  He hasn't had a serious seizure since he started.  Sometimes he will start into one, but it never goes into a grand mal and he is able to get out of it.  We also started him on Valium.  It relaxes him and helps him with his anxiety and irritability.  It also relaxes smooth muscle.  A wonderful thing is that he has stopped his gagging and we can now get more food into.  I don't know if it was getting off of Topamax (which irritates the Gastrointestinal system), or the Valium (which relaxes smooth muscle), or a combination of both, but this is wonderful news indeed!! Along with his high cbd, low thc medical cannabis we are in a good place.  I am so, so grateful.

This is what I have been waiting for for three years.  I actually feel like I can breathe just a little now, where as before I didn't feel that way.  I was always on alert and high stress, and the pressure was almost unbearable at times.

We are still not completely out of the woods, but we are doing so much better in terms of seizures and feeding, and I am so grateful for the Lords guiding hand.

Another piece of information on Josiahs side is that we decided to go ahead with his hip dysplagia surgery.  Even though I do not like the idea of this surgery and thinking about the details can make me feel queazy, I am hoping in the long run the benefits will be worth it.  Right now he can't sit in his carseat or wheelchair without screaming in pain.  To say that this affects his life would probably be obvious, since he is either laying on the floor or couch or being held all day.  As he gets bigger carrying him around all the time will become more and more unsustainable and so something does need to be done.  They will be doing crazy things like cutting bone, putting in plates and pins etc., but he is in pain already and if it can relieve some of the pain and help him sit in his wheelchair and car seat that will be huge.  So right now the surgery is scheduled for the middle of September.  He will have his oh so glorious spica cast from his upper abdomen to his ankles for six weeks and then we will start rehabilitation.

I've realized recently that I've talked way too much about Josiah and not enough about anything else.  I am sorry for this.  It has been such a crisis that I think have responded rather than being completely reasonable.  I have been praying for awhile that the Lord would make things sustainable and that wouldn't always be having to deal with emergencies and crisis and we could find a pace that works for the whole family.  We aren't completely there yet, (after all we do have a big surgery and recovery coming up, and teaching Josiah to adjust to his wheelchair), but we are so much better than we were.  Just having Josiah less irritable and more comfortable is HUGE, as that has always been a  huge prayer of mine.  I'm so grateful for the Lords good hand in this.

So anyways, I will try and be a little more balanced in the future.  I am starting to feel like I can breathe again, and the constant anxiety and adrenalin rush from constant emergencies is subsiding slightly although not completely.

I better get back to my day.  The kids are up.  I've started Josiahs feeding, given him some of his meds, and need to make oatmeal for the rest of my littles.

Have a blessed day, Charissa

P.S.  I forgot to mention for those who were kind enough to give me references for chiropractors, that we did see a chiropractor for Josiah and he said that unfortunately he cannot help him, and that Josiah needs surgery.  A big thank you to every who tried to help me think that through though.  I feel like we definitely tried and now have a clear answer.  <3 p="">