I Hate Seizures

Seizures are ugly, nasty things and I hate them. They steal my daughter's mind and her ability to learn. They interrupt her thoughts and make it hard for her to focus. As parents, it was devastating to find out that our daughter had permanent brain damage from birth. But at least then the damage was done and from there we could move forward. It is so much harder to deal with the seizures that continue to morph and change, especially when she has them daily and we get a front row seat.

Ruby and Mark met with the neurologist yesterday for a routine visit. Even though her seizures are as controlled as they have ever been, she still has several small seizures a day. We weren't sure if we should continue to fight these little eye roll seizures or if we just had to deal with them. Basically the neuro said that Ruby is doing as well as we can expect with her diagnosis (Infantile Spasms that have changed now into Lennox-Gastaut syndrome). He doesn't think that we will get much better seizure control then we have, even though she is still having them every day and even though the background pattern on her EEG hasn't improved much. This might be as good as it gets.

I knew in my heart this was probably true, but it is still hard to hear it from a professional. It once again makes me mourn the future and wish for a day when her seizures would stop and she would look me right in the eyes and say, "hi mom!"

For now though, that doesn't look possible on this side of heaven. So, I can grieve for a moment but then all I can do is keep loving on her and fighting for her. We pray she will be happy and content and we are hopeful that she will make some gains on her own time. And at the end of the day, we thank God for the little things in life that mean so much and for the peace that He brings.

Ruby Fendisha-- you are a blessing!

Little update since I first wrote this post-- Last night we increased Ruby's meds slightly because the neuro suggested it. This morning she had a tonic seizure like the one that landed her in the ER a few months ago. Thankfully we had diastat at home to give her and after about 9 minutes the seizure stopped (instead of 90+ min. like last time). She seemed to be doing okay after she stopped seizing, so we didn't bring her to the ER, but it was still very scary. We kept her home from school and now she is sound asleep, recovering. It is terrifying to watch her go through that, but thankfully this time she came out okay.

Once again, I hate seizures!

My little sweetheart LOVES her Daddy...

Busy Man

Here is a glimpse at what Mark has been busy with...




Here is what I have been up to...




Mark is doing an amazing job keeping things running at our house. Saying he has been working overtime is an understatement. I am so thankful for his willing attitude to take such good care of the us and the house without any help from me. Also-a huge thank you to friends and family who have helped with meals, laundry, the yard, babysitting...etc. We couldn't do this without you!

Baby Update

I went to the doctor again today and unfortunately I am slightly dilated. Because of this, he gave me a steroid shot to help the baby's lungs mature as much as possible and I have to go in tomorrow for round two of that shot. This doesn't really change much except for now we are going to try to be even more careful about my activity, even though I don't feel like I have done much this week. My brother is getting married next weekend so I am bummed that I won't be able to be very involved in with the wedding. I am still going to go, but I will have to make sure I do a lot of sitting. Thankfully we will have babysitters around to help with the kids.

We would appreciate your prayers for patience for the next couple of weeks and a healthy baby girl.

Ringer T

I am proud to announce that my little brothers have recorded another CD with their band, Ringer T. They actually aren't that little anymore; Kris just finished his sophomore year at Taylor University in Upland, Indiana and Kyle just graduated from Belmont University in Nashville. Kyle is actually getting married in less than 2 weeks! It has been a joy to be able to watch these boys grow into young men; I am very proud of all both of them!

Anyways, I wanted to brag about them for a minute and tell you all to check out their recording at http://ringert.bandcamp.com/. If you love it you can purchase it there or on itunes.

Nice work Ringer T!

Weekend

Quick update....
Not much has changed at our house in the last several days. Friday my contractions were coming more frequently so I went to the hospital just to get checked and everything still looks okay. Saturday and Sunday I didn't do much at all and because of that the contractions seemed much calmer.

My husband was fabulous this weekend. He did everything around the house and took care of the kids all weekend. I feel bad that I can't help, but this is how it has to be for now. I am sure he was looking forward to going to work this morning to have a break :) I told Mark that by the time the baby is born, having three kids will seem like a breeze compared to him doing everything by himself :)

Overall we are doing pretty good. I am in my 32nd week of pregnancy; the baby looks very healthy so far and so if I can lay low for about 4 more weeks then hopefully we will be good to go! Thanks for your prayers and help!

Update

I went to the doctor yesterday and he said that everything looks good for now. I am supposed to hang out on the couch as much as possible and keep taking the medication that seems to calm the contractions down. As of now, no further action is needed so we will praise God for that and hope that is the case for several more weeks!

Contractions

I have been having contractions for the last several weeks and we have been watching them and taking it easy. Last Thursday I had them every 3-5 minutes for a couple of hours so I ended up at the hospital with IV fluids and a med to make them stop. Thankfully, even with all the contractions, I was not dilated on Thursday night. All weekend I have been taking my medicine and taking it easy, but I am still have contractions off and on. So, today, the doctor said to stay on the couch, stop working and to come into the office tomorrow.

Laying on the couch for the next little bit does not sound like fun, but it is much better than having a baby at 30 1/2 weeks. I am bummed that this is the way things are going, but we will do what we can do to try to keep this little girl from being born for several more weeks! We appreciate your prayers for no more contractions and a healthy little girl in July (no sooner!).