Critter Barn

When Mark's family was here, Paul and Jill and Mark and I took the kids to the Critter Barn in Zeeland. We decided to leave Ruby home with a babysitter so the trip would be a little easier and so she could get therapy done.  So, we took Charlie, Jade and Max (Charlie's cousins) and we had a great time.  Charlie LOVED it; he ran from animal to animal saying, "neigh", "moo" or "quack". He had no fear of the animals even though he got pecked by a turkey and licked by a horse. We will have to go again sometime because he enjoyed it so much.

Quick Ruby update..... we have been increasing the dose of her Zonegran for a month now, but we haven't seen a decrease in seizures; actually the seizures seem like they have increased slightly.  We are going to give the med another week or so, but I am not too hopeful it will work.  There is one more med we might try, but in the meantime we are going to set up an appointment with the dietician to see if we can try the ketogenic diet again.  Ruby's stomach couldn't tolerate it last time, but hopefully she can handle it now since she is older and can eat actual food now instead of the nasty formula we tried before. 

Today I am thankful for Charlie's zest for life. He is energetic and even wild sometimes, but he loves life and he often makes us laugh. I love his outgoing personality.

I am also thankful for thoughtful and supportive friends.  Friday good friends offered to babysit so Mark and  I could go out to eat together; what a great break for us! Tonight, some other friends offered to have us over for dinner. We feel very blessed to be well taken care of!

Twins Game

I never posted my pictures from the Twins game we went to in Detroit a few weeks ago. In light of how they performed against the Yankees last week, I wonder if I still should..... but we had such a great time, so here they are :)
                                                                         Mark and I

 Scotty and Christina--- good friends from Ohio that met us at the game. It was great to see them!

                              The huge burrito Mark ordered at 11:30pm after the game.He didn't eat it all :)

                                              Oops- this one didn't get flipped....oh well

What a fun weekend away!

Blessings

I decided I don't like the negative turn my blog posts have taken these last few weeks, so I am going to try to mention things I am thankful for with each post. I still want to share my journey with honesty, but I want to remind myself of all the things that God has blessed me with too.

So-- today I am thankful for family.  My husband is such a support to me, my kid's smiles melt my heart and the encouragement of our extended families has been amazing. My parents often babysit, help clean and cook for us. We love how much they love on Ruby and Charlie. This past week Mark's whole family (Grandma, parents, and brother's family) traveled from IA, MN and SD so we could spend time together.  It was so great to see them and be able to take time out of therapy to laugh, eat, swim, shop and golf together. We are blessed by their generosity and constant love. I have great pictures, but as usual I don't have time to post them right now. I am very thankful for family that gives us constant encouragement, prayers and support.

The Appointment

I am sorry it took me a few days to post about Ruby's appointment! We have been having a great time with Mark's family; they were here from MN and SD for the weekend and we stayed very busy. I will post about our fun weekend, but for now, here are a few thoughts about our neuro appointment.....

-We didn't learn much that was new, but it was good to confirm things with the doctor and be able to ask him questions about Ruby.
-She doesn't have full blown Lennox Gastuat syndrome yet, but it looks like we are heading down that road
-We were reminded that this syndrome is very hard to control and success for her would be to have a 50% reduction in seizures. Sadly, it doesn't look promising that she will ever be seizure free.
-The medication (Zonegran) we have her on now seems to be making a small dent in her seizures. We will keep increasing that for another week and a half and then we will chat again with the doctor to see where we are at.  If she has great results, we will stop there or if she is still having a lot of seizures we could add a second med or try the ketogenic diet again. 
-The doctor thought her structure was looking better, which is encouraging to us that all the hours of ABR we are doing are making a difference.

Even though none of this information was really new, it was still a little hard to hear. Yet, there is not much we can do. So, we cry a little and then we move on and do what we can to keep fighting these stupid seizures and love on our baby girl.  We are determined to not mourn what we don't know and we keep trying to enjoy each day and not think too far into the future. There are hard minutes, hours, days..etc but God is good and has given us a lot of peace about the road we are on with Ruby. This new diagnosis doesn't change the fact that we have a beautiful, smiley little girl that needs to be changed, fed and cuddled, so that is what we focus on.  Thanks for your continued prayers.

Cross Your Fingers

We have a neuro appointment rescheduled for tomorrow (Thursday) afternoon...I will keep you posted!

No Kidding

Our neuro was sick again today. So, after finding a sub and getting everything squared away so I could go to the appointment, it got cancelled. Frustrating! Hopefully we will find out about a rescheduled appointment soon.

Zonegran

Ruby has been back on seizure meds for one week so far and things have gone fairly smoothly.  The med she is on (Zonegran) takes awhile to get to full effectiveness; we start her on a low dose and then slowly, over a month, we increase it until we reach her theraputic dose.  So far, we haven't seen much of a decrease in seizures, but I do feel like she has been more alert and responsive.  We just increased her dose last night so we will keep watching and waiting to see if this will help her.  Thankfully we haven't seen any weird or nasty side effects to this med; I hope that remains the case as we continue to increase it. 

We are meeting with the neurologist on Tuesday afternoon; this is our rescheduled appointment from when he was sick last week.  I have many questions to ask him about Ruby's future treatment and prognosis so I am anxious to talk to him. We want to know things like..... what other medications we should try?  Are Ruby's seizures more focalized than they were on the last EEG? (which means maybe we could look at surgical options) Would it be worth trying the ketogenic diet again now that she can eat pureed food instead of just formula? .....etc.

Your continued prayers for direction and wisdom are very appreciated! We have been feeling God's peace in the midst of this discouraging news and He does continue to be faithful to our family.