perspective matters

Wow.  Not sure how five days have passed since I last updated but I guess this week has flown by faster than I anticipated.  It was busy.  Travis started the week with a trip to the ortho doc who said his foot is still not completely healed and he looks good, but no exercise for the next six weeks which is when he sees the doctor again.  Then Ryan saw a new dentist on Tuesday whom we really liked.  He explained a lot more than the last dentist we saw, and said Ryan’s teeth are about 7 1/2 yrs old developmentally, or one year behind his biological age.  He is doing fine and the doctor said Ryan doesn’t need xrays for two more years and he wants to do a thorough cleaning the next time Ryan goes under general anesthesia.  This dentist has rights at Children’s, UNMC and both Lincoln hospitals which is helpful.  His hygienist cleaned Ryan’s teeth which he hated, but that’s the first time it’s ever been done so Travis and I were very happy about that.  On Wednesday Travis took Ryan to see the neurosurgeon’s PA – finally – for his post op appt; she said he looks good.  Travis explained the problems we are having with the retching, nystagmus in his eyes, tremors and pain after giving meds.  She called us later in the week and said the neurosurgeon thinks it could very well be nerve related but he’s never really heard of Ryan’s symptoms.  Thursday Travis headed back to Omaha with Ryan again to see the GI doctor who is one of the doctors who saw Ryan in the hospital.  She is very sweet and said she, too, has not heard of all the neurological problems Ryan is having, but did say his intestines and stomach seems to be doing well and are progressing very slowly in the right direction.  The good news is Ryan is eating more and able to tolerate small amounts of food without throwing up or getting nauseous.  It’s progress we are very excited about but he is still nowhere near being able to get off the feeding pump.  And then there is still the issue of all these problems we are having with medication administration.  Once again Travis was told to see the neurologist which is what we will be doing on April 10.  We continue to try everything we can think of including eliminating medications, isolating each one to see if he’s developed an allergy or side effects suddenly but we simply can’t figure it out.  On Monday Travis is going to try a new schedule he came up with giving one medication every thirty minutes which will take three hours to finish.  He essentially tried this earlier with Ryan and after one of the meds, Ryan started retching and having lots of pain and tremors.  But then when I tried giving this medication alone again, he was just fine.  It’s puzzling and very aggravating not being able to figure out what is going on.  I am completely convinced this is all a neurological issue, and Ryan has nerve damage affecting his stomach and intestines.  I guess time will tell when we find out if the neurologist can do anything.  If not, we may end up needing a referral out-of-state which I certainly don’t want to do.

On a positive note, the older kids are doing great.  Brad had an all-nighter with some friends at their church so he slept a lot today then went to dinner with one of his best friends.  I made him go to bed early which he wasn’t thrilled about but thankfully he was smart enough not to argue with me.  These kids don’t understand how much sleep they really need but what kid ever does?  Trevor was all over the neighborhood today after a friend spent the night last night, and Sidney and I spent the day in Omaha at a volleyball tournament.  I was able to sneak out and have lunch with my dear friend, Michelle, then some of our best friends came over in the late afternoon for a while.  Travis is at work this evening, and I had a house full with lots of the kids’ friends here.  They have really enjoyed Sidney’s volleyball net in the backyard, and even the boys like to play.  It’s been so nice outside and Ryan has spent quite a bit of time on the deck these last few days watching the big kids run around out back.  Of course he loves to be in the front yard too throwing rocks all over the driveway but that’s what he loves to do out there.

Travis and I are doing OK although we seems to not get a lot of time together these days.  We’ve been so busy with appointments and me working that we simply haven’t made the time to get away for an hour or two.  It’s hard though now that he is working a few nights each week again with me working nights too.  And during the day Ryan is with us all day when we do see each other; we are making it a priority next week to get some time together even if we have to schedule it on the calendar.  That sounds pathetic, but with Ryan’s medical issues continuing and our new work schedules, it’s been hectic trying to fit time for us in.  I have to say what a blessing Lyndsey has been taking care of Ryan when both Travis and I are gone.  And hopefully Alli will be back doing respite very soon too.  We’ve had some very wonderful woman in the last few years who are priceless and have all become family, loving on all our kids and becoming staples around our home.  It’s been a big adjustment not being able to leave Ryan at home with the kids now that he has his feeding pump but this new normal is just going to take time to figure out.

This week at work there has been a lot of grumbling because we are changing from self scheduling to assigned lines, or six-week rotating schedules.  So now instead of picking when we want to work, we will have the same shifts every six weeks.  I’m fine with it because I’ve learned over the years to pick my battles and not let situations I can’t control get the best of me.  There are positive and negative results from any decision in life and I can either learn to accept things as they are or be miserable complaining about everything that is wrong in my life.  It’s simply a matter of finding  joy every day no matter what I am facing.  I’m not always good at it, but with time, God is really working on my heart showing me that what is really important is relationships, not circumstances.  My job is to be the light in the darkness and if I’m focusing on the things that are going well and learning to be thankful in every situation, that’s when I’m filled with joy.  It’s definitely a choice whether we let circumstances control our attitude, and thankfully, it’s one I’m getting better at every day, little by little. And it’s amazing how God continues to provide when Travis and I stop worrying and fretting over things we can’t control lately.  I love this saying! Isn’t it the truth?!

3 thoughts on “perspective matters

  1. Hi, just caught up on some of your most recent posts. So sorry to hear that Ryan is still having all the stomach issues. I know Ryans stomach issues are being caused by different reasons than Steven’s, but this week I have talked to more moms who have little one’s on dialysis and all of these children have GI emptying problems. These children also have wretching and vomiting issues. It is a symptom of pediatric kidney patients that the doctors do not have an explanation for, they just know that all of these children are experiencing it. We have been dealing with this for 19 months now, and I know that the things we find helpful are by no means cures. We are also in the mode of trying anything to improve our son’s quality of life. During his violent wretching, I would put Steven’s meds in with his food in his food bag. I know it is not ideal, but it gave Steven some relief. If Ryan can have his meds spread out over three hours, maybe his meds could be put in 3 hours worth of food. I found with Steven, the more food I could dilute it in, the better. I know this is very hard, and the extremely slow progress is frustrating. In 19 months, Steven has gone from wretching for 4 hours solid every morning and then at least twice an hour the rest of the day to now only wretching 5 to 15 times a day. We still never go anywhere without a puke bowl, but life is so much better now! I am sure it will get better for Ryan too! Love you all! ~Penny

  2. Thank you for sharing. We are thinking of you daily. Praying for wisdom and continued peace as you go through each day. Lots of love sent your way.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s