Stressed, but Blessed

There are many moments these days where I feel like I am drowning in stress. Trying to keep the house show-ready, finding homes for the dogs, and Grayson’s current issue (more about that in a minute) have me wanting to raise my white flag. But alas, I can’t, and keep on going. And going, and going.

Thankfully, we have so many people helping us deal with life right now and relieving a little bit of the stress. We had a big cooler of frozen meals delivered Sunday by “anonymous” helpers (THANK YOU so, so much if you are reading). I have an offer from a friend to go to her house if we need to while we have showings. And countless other friends have offered prayers, time and help. I am so grateful.

One of the biggest blessings of the last week is we found a wonderful new home for Chloe, our westie. We have two more nights with our sweet pup and she will go to her new family on Thursday, where she will have a big yard, 2 human brothers and 1 canine sibling. I know I will bawl my eyes out and will miss her so, so much, but I am so relieved we found her such a great home so quickly. And we have a potential new home for Gabby too- we will meet up on Saturday to see if it’s a fit.

Another blessing that becomes more and more precious to me as time goes on is my Mito Mom friends. I have learned more from them than any doctor, and this week, as we have been dealing with issues with the new tube, I have gotten awesome advice from these moms- even when I literally had a message yesterday from a GI nurse saying, “I can’t help you.” Really???

Grayson’s new tube technically is doing what it’s supposed to do. All his formula goes into his intestines, bypassing the stomach. And the formula is staying in, which is wonderful. BUT- he’s still throwing up stomach secretions every day, as well as anything we put in his stomach, which is supposed to be his medication. I have absolutely gotten NOWHERE with GI- which partly is my fault because for some maddening reason, I NEVER hear the phone when they call and it’s not like you can call them right back- if you miss their call, too bad. Start over by leaving a message, which someone will translate incorrectly, and then the nurse will call you back with an answer not even close to what you need. It’s an awesome system.

Anyway, thanks to my Mito Mom friends, I’m putting his medication in his intestines, so it’s staying in. And last night, I ran Pedialyte through his tube all night instead of formula. He woke up happy and not puking- amazing! I don’t remember the last time he didn’t throw up within minutes of waking up. I put him back on diluted formula around lunchtime and he made it to 5:30, but then threw up again.

We saw the Mito specialist this morning. We left the house at 6:45 and got back home at 11:30. And yes, all we did was drive to the med center for the appointment and back. It was a loooonggg morning, complete with lots of traffic and waiting an hour and a half past our appointment time to see the doctor. The appointment was good- she changed the dosing on one of G’s meds and is going to try a different seizure med with him to hopefully help with his irritability. They are still working on seeing if we can get a genetic diagnosis for him and if he will be eligible for the Leigh’s clinical trial drug. We may know something in about a week. She did warn me that it’s likely we won’t get the genetic confirmation though, so I’m not obsessing too much about it. There’s too much disappointment in this Mito world already.

She still wants Grayson to see genetics, but the soonest appointment they had when I called was January 31- three days before my due date. Obviously, that will be NO help for me as far as prenatal testing, and logistically, I doubt I would be able to take G to that appointment. So the Mito clinic called the genetics clinic today and got him in for January 17. So…this baby MUST stay in until at least the 18th! You hear that, baby? ha!

A year ago Grayson was in the hospital- still undiagnosed, and we didn’t know why he was throwing up uncontrollably. We are in such a better place now- yes, he’s still throwing up, but we now know why. I have so many new friends who I unfortunately have met because of this awful disease that our kids have, but am so blessed to know and learn from. And I still have this little guy, who fills our life with love and joy.

(Refusing to nap in his crib today, he passed out on the floor late afternoon)
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13 thoughts on “Stressed, but Blessed

  1. Glad you're finding homes for the pups!The gj tube never helped D's vomiting really. You could try/ask about putting a drain bag on the g port now that you've learned about putting meds in the j. We drained at night mostly, but on bad days, too. Periactin (in a higher dose than used for appetite) made the only big difference in the puke.One foot in front of the other, right?

  2. Look at Grayson relaxed on the floor – so cute! I am so thrilled to hear about the homes you're finding for your pups. That makes me very happy! It must be so wonderful to find loving people to love your animals. I know this is hard, but you're doing right by them!Poor G – I wish he didn't have to throw up so much. I wish you didn't have to spend your days wondering when he'll throw up next.

  3. So happy to hear you are finding homes for your dogs. We found a home for one of our dogs this weekend and then today, they called and asked us to take him back. SO crazy, because we had already had our tearful goodbyes and are debating if we are going to keep him now or now. That's nice the genetics appointment was moved, but seriously crazy how far out they are booked. Thinking of you guys and hope you can find some more tricks to help out G!

  4. Glad the pedialiye helped. Wish the diluted formula was a success too. Ugh. Let me know if you want to try those Farrell bags to see if it helps. I have some for you if you need them. Hugs, girl…Melody

  5. So glad that you're getting good help from good people! I'm sure it's still amazingly difficult though. Can't even imagine. I hope that they can fix whatever is up with the new tube! He shouldn't have to puke all the time, that's so awful. Maybe the pedia lite will start working more and more for him. Good luck with the genetic testing!

  6. I so wish I could truly DO something to help you. My heart aches for you and your family. But prayers are going up to the Father for you. HE is your strength. HE is your hope. HE is your rock!! Hold on to HIM!!!

  7. Oh my, hope that G is feeling better soon and everything regulates in his little body. So wonderful that you have such an amazing support system and so sweet to have meals show up on your doorstep!!!

  8. Just read on yahoo about some new seizure meds that have been approved. Didn't take notes so can't remember the names nor could i spell them correctly. grayson is such a gorgeous little man. wish you could bottle his hair color – I told your mother in law the first time i saw a pic of him that i loved his hair color. At this age, I just want more hair – any color would be great. phyllis larue (taught w/ Ms. R at sherwood for a few years)

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