I got a phone call several weeks ago. The kids neurologist was very excited about some possibilities for our family. Her nurse and I put our heads together and came up with this past Monday as a good day to bring in ALL the kids for a total of 9 appointments!

Then I get a call on Saturday that the VA had a loaner power wheelchair for me! We made an appointment for later in the day on Monday and added it to the top of the heavy day.

Monday we get up there and go right through the center of rush hour into Pittsburgh. YIKES! We get in and start the appointments. We brought snacks, drinks, tech, and lots of coloring books to keep everyone busy.

Getting a breathing treatment while homeschooling

It turned out to be a tough neurology appointment.  The dr was concerned by Gr bad enough that she needs another MRI, swallow study, and multiple labs. It looks like she had a stroke that has effected her right side. *Reminder* Gr’s last 2 strokes have effected her left side. She is low tone and weak all over but startlingly weak on her right.

R was extremely low tone and weaker, more than last summer. The difference was so stark that she had no reflexes in several places, before she had low findable reflexes all over . Since R has a history of Chiari brain surgery this means she too must have an MRI.

Bella and M had a couple of issues that require blood tests to check on but in general they were okay.

G is continuing to worry his doctors with his yellow tone but the liver labs seem okay. He is going to get a full ultrasound of gallbladder and liver when we get back from the trip. He too has shown a steep decline in his neurological signs. We decided that he does not need a MRI. His previous MRIs showed a pattern of MS like lesions throughout his brain. There is nothing we can do about them and he is not having acute issues like Gr. It would be more traumatic for him to have an MRI then not too.

The genetics dr is putting us into a research testing. It’s simple. When the research is over or we get the results and can say more I will. This is a good thing we are happy about.

Finally we leave the hospital and rush over the VA hospital for the wheelchair therapist. I tested the chair and it was great. Then they said can we put it in your van. I said sure if you have the ramp. They said no I had to have the van modified and should have already been contacted by the VA about that. I was not. No one put the paperwork into the computer. Then they said they would deliver it. Until they found out that the ramp people had NOT put in the ramp last Friday like promised. The ramp contractor is going to cut 2/3 of the decking off my porch and I have to deal with the last 1/3 myself. So no loaner chair until my van gets a modification or the ramp gets put in.

We have been back and forth several times since Monday about the van and ramp. Trying to schedule the appointments and blood tests. All while prepping for the mini vacation/dr appointment/convention speaking jobs trip. I could use two of me or one of me that works.

This is going to be an intense trip. Then when we return we will go right into more intense appointments and tests for the kids. This is going to be a long spring.

Our medical journey so far this year is off to an interesting but VERY intense start.

We have been already been to 7 specialist appointments in a month in a half. All in Pittsburgh OUCH, that is a long ride. Next week is going to be a LARGE important neurologist/genetics appointment with labs and an ultrasound for ALL 5 kids. Those days are tough but we have found the hospital cafeteria has good food. In the end we will be exhausted but I hope have some answers and perhaps a new treatment on the way.

Update for the power wheelchair. I have had an in home evaluation from the contractor for the power wheelchair and cruised around in the one he ordered. Sadly that chair most likely won’t come in until May. I was told I would have a ramp installed immediately. The person that was supposed to do that has failed to show up for the home appointment. Now neither he nor his boss is taking my phone calls. grrr I am praying hard I can get a loaner in time for the end of March conferences I will be speaking at.

Gr’s power chair is STILL on order and paperwork delay.
R’s wheelchair has not been ordered for some strange reason?? Hoping Monday will get that worked out.

M will be getting Gr’s old wheelchair. Her legs are hurting more and more even with pain medication to help them. She is also becoming winded and tired after just a small amount of walking. She is excited to have her own wheelchair to, “help her leggies.”

This past Monday we talked with the VA and had a clinic appointment. They doctor was extremely helpful. The VA is helping me to start up several specialists that I had lost through the intense last year and missing several appointments. The dr agreed that I am flaring with my autoimmune disease and need an urgent appointment with Rheumatology. Cardiology is being brought on board to watch the hole in my heart and not touch me unless there is no other way. I am too delicate. I am getting a GI and dietitian that will follow me more closely then I have been so far. I also have neurology to see because a seizure or 2 a week is too much and she wants me to see if my meds need changed. <<sigh>>

It was a huge day. In the end we felt there was a lot accomplished. Because while we were going in and out of appointments we were fielding phone calls. One is for the big appointment next Monday. The other….drum beat….. the HUGE genomics test for mitochondrial disease is being pushed through insurance for one of the kids! This test is over $10,000 and the doctor wrote in big letters that the test would not happen if the family had to pay out of pocket. Bless you Dr G.

That leaves us up to date with the comings and goings of major issues. The little stuff is the M, R, GR are all in a nonstop rolling sinus/asthma breathing problem. Some days with fever other days without. G is having a significant energy problem. We have pushed him to the top of the list for his lab tests and ultrasound immediately. There is something happening and we need to find out what the problem is immediately.

Hanging out together on my hospital bed.

On a strictly FUN FAMILY update: We are taking a working vacation! I am speaking at two homeschooling conferences the first is Teach Them Diligently in Spartansburg, SC. We are then going to stop in our genetics dr in Atlanta, GA on Monday because I and G are having sliding health problems. Hoping for some ideas to stop this slide and stabilize. Finally we are going to travel upward towards St Louis where I am speaking in the Greater St Louis Area Home Educator’s EXPO. I will be a featured speaker there!

When I realize that this time last year I was eating, walking with a cane, and driving my kids to a great co-op. This year I cannot eat by mouth. I cannot drive. I cannot even walk down the street on a nature walk with my children. Chris and I have realized that we have to savor every moment, every day. In order to do that we are moving to make memories in every way we can. A quick vacation here. Hand print art. Creating a quilt together. Reading our Bible together snuggled on my hospital bed. I am thankful for today.

Praise the Lord for every breathe!