Pneumonia and Meds

Ruby had a fever yesterday so I took her to the doctor to find out what was wrong. Her breaths/minute were a little high so the doc sent us to get a chest x-ray and it turns out Ruby has pneumonia. AHHH! This is frustrating first of all because she felt so miserable yesterday but also because I had to spend the afternoon at the doctors, cancel two therapy sessions, cancel a mini date Mark and I had planned and stay home from play group with my friends. Also, we planned a camping trip with our small group this weekend that now we might not be able to attend. I was at the pediatrician's office with both kids on separate occasions this week and I filled 5 prescriptions for my kids (Ruby's seizure meds, Charlie's ear infection and Ruby's pneumonia). When I stepped up to the counter at Target pharmacy last night they said "TenHaken"? It is sad when the whole pharmacy staff knows us by name. Yuck!

Okay-- enough of my pity party. The good news is we caught her pneunomia before it got too bad and it looks like her fever broke in the middle of the night. Hopefully, after a few days of medicine we will be back to normal. We have a weekend to MN planned next week and I really don't want to cancel this. Charlie's ear infection seems to be doing a lot better and he is also getting his first two teeth but he has been a trooper about it.

We haven't heard back from neurology about weaning her vigabatrin; if I don't hear back from them in the next few hours I will call them again to see what they think. Hopefully they will give us the green light and then we can start weaning this weekend.

Thanks for your continued prayers!

Concerns

We were supposed to start Keppra yesterday, but I have really felt uncomfortable about giving Ruby 3 strong anti-seizure drugs at once. There were multiple times last year when Ruby was on this many meds and I remember her being so doped up. She often slept so hard that it would take me 30 minutes to get her to wake up. We couldn't do therapy with her when she was like this. I am not willing to go back down that road. Mark and I have talked a lot about this and we really feel that it would be better to wean her from at least one of the meds first and see how she does before we add another med to the mix. I called neurology last night and let them know how we were feeling so I am hoping they will call back today with a plan. I know we have to fight these seizures with everything we have, but I feel that after a year of throwing different drugs at her and we need to start looking at how to do things differently. I have also read from several other parents whose kids have IS that Vigabatrin (one of the drugs Ruby has been on for a year) can cause low muscle tone which is what Ruby struggles with. Mark and I would love to see if weaning her off this drug helps her muscle strength come back. At this point-- what do we have to loose?

I would appreciate your prayers for these decisions that have to be made. I know I am not a neurologist, but I have done a lot of research and Ruby is my little girl so I feel like in this case I need to act on my gut feelings.

New Drug

We heard from neurology yesterday and they officially gave us the results of the EEG from last week. The bad news is that she is having some very subtle spasms and she is in hypsarrhythmia. The good news is the other couple of weird movements she is doing are not seizures. I really thought they would tell me that she was having multiple types of seizures, but it looks like we are still just fighting the spasms. This is a relief. The neuro wants to start Ruby on another drug called Keppra. If this doesn't stop the spams over the next month, then he would like to start her back on ACTH (the horrid steroids). We see him on Oct. 8 so then we will talk about whether or not this is a good plan. I want to do all I can to get her out of hypsarrhythmia, but the steroids were so hard on our family. Medically she handled them okay, but I don't know if I am ready to go back to 3 months of living with a fat, crabby and sleepless little girl. I guess we will cross that bridge when we come to it, but for now we will try Keppra. If anyone of you out there have tried that drug with your kiddos before, I would love to hear about how it went and what side effects I can expect.
We are praying this will be the one that stops them for good!

One Year Ago

One year ago today we first met our Ruby. She was a tiny, sick, scared baby when we first saw her; I remember feeling so excited to meet her on this morning a year ago. When we finally held her I was so relieved to have her in my arms but terrified because we knew something was not right. Wow-- it has been quite a year.

Ruby- You are our precious daughter. You have forever changed us for the better and we love you from the bottom of our hearts. We pray God will use your story to make a difference in lives of others. We are blessed to have you in our arms. Love your Mom and Dad.

Ruby a Year Ago:





Ruby Today:

They Are Back

The spasms are back. I have been fearing this for weeks; whenever I saw weird movement my stomach would drop. I fought back a panicky feeling by rationalizing why what I saw wasn't a spasm. I tried to talk myself out of believing that I had seen spasms, but deep down in my heart I knew what I saw. Now it has been confirmed by her EEG. The doctors haven't officially read it yet, but when we talked to the neuro in the hospital, he said her last EEGS showed that nasty spasm pattern called hypsarrhythmia. He will read the entire EEG this weekend and then we are expecting to hear from him early next week.
I am kind of numb to this news. I was expecting it, but it still wasn't easy to hear. I feel like we are back to square one; after a year of fighting these stupid seizures, we aren't any further along in getting rid of them. Part of me feels like giving up on meds and treatment. Maybe we should wean her off all the meds and just see what she does. What do we have to lose at this point? Maybe the meds make her cognitively worse... who knows? Further steroid treatments sound exhausting.
But, I can't give up. All I can do for my little girl is fight and hope. Hope that she will some day be able to put a cheerio in her owm mouth and that eventually she will be able to look me right in the eye and say "mommy". Hope that I will get to see her sit up on her own and take her first steps. I will not give up on her; God is not done with her yet. To hope is to survive and so I choose to be hopeful and to live this day to the fullest.

"I will live today loving my child as she is right now, and not project fearful possibilities in the future" -- anynomous from Changed By a Child

The Weekend and Tomorrow

I hope you all had a great Labor Day weekend. We enjoyed some time with friends, family and even a few rounds of golf! It was very nice to have Mark home for an extra day.

This morning was the start of a new schedule. Ruby's therapy was a little more relaxed this summer because Early On doesn't come during the summer and because we were giving cranial sacral therapy a try. As soon as we get our new insurance to authorize everything, we will be starting a full load of therapy at Mary Free Bed. Ruby had an evaluation for speech therapy there today; it went well and basically they said she needs some help learning to drink out of a sippy cup and learning to eat and swallow foods with more texture. Now, we are gearing up to do speech, physical and occupational therapy in Grand Rapids, each twice a week and then cranial once a week. I am a little overwhelmed by this, but I am trying to remember to take one day at a time. I do hope though that this much therapy will make a big difference for Ruby.

Tomorrow is Ruby's 24hour video EEG. We check into DeVos at 7:45am tomorrow and then we will be discharged early Thursday morning. They are hoping to get a very good picture of the activity in Ruby's brain. The doctors need to know if she is having seizures and if so what kind they are in order to make wise decisions about her medicine. I am thankful for meds that can help with seizures, but I don't want her to be on so many meds that she is a zombie because this can hurt her development. Please pray that the doctors will see what they need to see and will be able to make some solid decions about what to do with her meds. Thanks in advance for the prayers.

Mary Free Bed

Our evaluation today at Mary Free Bed Rehab Hospital went well. There were a few miscommunications about whether or not they were going to do a physical therapy eval as well as an occupation therapy eval, but they got it figured out. Basically, they worked with Ruby and then said that she definately qualifies for further therapy. It sounds like we will be there two days a week for two hours each time for OT and PT. We will have to add speech therapy too, but we don't have that eval until next week so we will see how often they want to see her. They also had a rep from a medical equipment company come and try Ruby in a stander. This is a large piece of equipment that we can strap Ruby into and then she can be in an upright position. We ordered one that will work well for her, but it may take months to get because it has to go through insurance first. I am excited to get it, but I am not exactly sure where it will fit in our house! It sounds like they are also going to order little braces for Ruby's feet to support her ankles when she is standing.

I am so glad we are going to Mary Free Bed for therapy. I think they really know what they are doing and have worked with so many other kids like Ruby before. The reality of her special needs set in a little more today when I saw her in the stander and when they were talking about braces for her feet. That was a little tough, but mostly I just felt hopeful for the possibility of change with new therapy. God is faithful and I have felt His peace this week.

Next week Wednesday we will be going to DeVos for a 24 hour video EEG. Ruby's EEGs are still very chaotic and they want to watch her overnight to make sure they know what is going on. I am not looking forward to staying in the hospital again, but I am relieved that someone else is going to watch her every move so I don't have to for a day. I think this long EEG will help them make new decisions about her meds.

Thanks again for your prayers. We would appreciate continued prayers for Ruby's new therapy, for her upcoming EEG and for peace for Mark and I.