Playing with Nonna

Well...I have just a few minutes before we need to leave to go to the Hematologist...and I wanted to do a quick shout out to my mom!

Nonna is Kendall's primary care taker when I am at work. She also accompanies me to almost every Dr. appointment and therapy appointment! She is an amazing mother and grandmother. I know in the past I have put more than a few gray hairs on her head, but she has been there for me with the same smile on her face through thick and thin. She has the most positive outlook on absolutely everything Kendall related. She must have been a therapist, hematologist, ophthalmologist, speech pathologist, pediatrician, neurologist, etc...in a past life. Her faith in the Lord and His healing powers guides me and holds me accountable throughout this tough journey. She looks after my dad, my sister, my grandmother, all with a positive spin on everything. I'm sure she has her moments, but lately she has hid them from me quite well. Justin and I say on a daily basis how much trouble we would be in without her. And we mean it.

Throughout this experience, I often feel like I am stuck on a deserted island...as friends and even family members don't quite understand the every-day life around here...but my momma is always there with a smile on her face!

Thanks Mom! I love you and respect you now more than ever! Thanks for your patience with me and always being my cheerleader! LOVE LOVE LOVE you!

No Rest for the Weary

When my sister and I were kids, my dad always used to say "sleep fast" when we'd go to sleep late at night and have to wake up early in the morning. Unfortunately, I am now 30 and still don't know how to do that! Sleep is not easy to come by these days. Kendall has started to have seizures in her sleep. I thought this was uncommon for Infantile Spasms, but like everything else with Kendall, unlikely things seem to always happen!

I picked up copies of Kendall's past 5 EEG's. The last one shows that the "study does not rise to the level of a modified hypsarrhythmia, but is consistent with an epileptic encephalopathy." If anybody knows what that means, please let me know. Also, the last video EEG (done before the one I just asked about) states that she had "multiple tonic spasms, hemihypsarrhythmia, and diffuse slowing and disorganized." So, does that mean she has IS on only one side? I don't understand!

Her seizures are disturbingly increasing in frequency and force. This morning at PT she had several, but her head control was great! We have officially added OT to our list of services now too. The new OT gave us some great things to do with Kendall to promote more reaching and grabbing. It's just really frustrating to me because her seizures rudely interrupt pretty much everything we do in the morning. I'm really ready to move on to the next medication. Our hematologist appt. is on Thursday, so hopefully we will make new decisions soon after.

Please continue to keep us in your prayers this week.

What does your baby's room look like?

Our once cute nursery now looks like a physical therapy center! The first day Kendall got her "little room" (the white thing with the resonance board...its supposed to give her a place to play where she can feel her movements and discover toys....she doesn't love it as much as I thought she would) Justin said "most little girls have a dollhouse...Kendall gets a science experiment."

We have accumulated a lot of things from our wonderful VI and Orientation and Mobility teachers through the school district! ECI has recently dropped off a big Special Tomato chair, that Kendall is starting to get used to. But her favorite toys continue to be her baby doll that sneezes, cries, says momma, and wears Kendall's old glasses (pictured to the right) as well as Rody. The donkey looking thing that I ordered from a Special Needs catalog and paid way too much for. This thing is amazing. It serves as a riding toy, encourages tummy time, and Kendall loves to grab his ears. I also think we've bought pretty much every toy that lights up and makes noise. (Kamden thinks the closer you put something to her face, the more likely she is to notice it!)

So while her room doesn't exactly look like it would fit in a Pottery Barn catalog, it serves its purpose. We often have all four of us, and the dogs, in there watching Kendall and laughing on the floor together. Kamden loves to get down on the mat and read to Kendall too. Nonna works in there with her every single day for at least 45 minutes listening to the CD we made her on her Hello Kitty CD player! Grandad is pictured above filling in while Nonna's out!

Who would have thought this would end up being my favorite room in the house?

Update

The nurse just called back...Kendall's EEG has improved since the last one, so the Topamax is helping. She said the types of seizures she's having are Tonic. She said usually they would start a more aggressive treatment at this point, but due to her Factor V issue, we have to wait until after we see the hematologist. She said Dr. Malik is concerned with the possibility of her having another stroke, so we have to get the blood stuff worked out before ACTH or talking more seriously about surgery. So, Topamax it is for at least a little while longer.

Kamden received his Gold belt last night. Justin, Kendall, Grandad, and I watched proudly as he demonstrated his skills! He was quite proud of himself...as you can see in the picture.

She's BAAAACK!

We have our Kendall back! Justin took her to the eye Dr. yesterday and he said it was already healing. She started to eat again, and began smiling again on Sunday night. Thank goodness!
We finish the last of the ointment today and we should be able to put this ordeal behind us.

The Neurologist's nurse called to day with the EEG results. Are you ready for this? It seems the Topamax is doing it's job. The patterns look as if they are going away. He doesn't want to change the medication at all yet. I had a few more specific questions, so she is going to talk to the Dr. and give me a call tomorrow. I feel so relieved and at peace right now...I don't know what to do with myself! Please keep the prayers coming! I'll update as I know more.

Due to "tough economic times" my company has done another round of lay-offs. I was spared again... (but my work load has pretty much tripled!) I should probably feel relieved and at peace with that right now, but it is very hard when others close to you have had their lives flipped upside down. It has been an emotionally draining past two days.

Turns out MY eye issue is just a dry cornea! My pressures are good too. (always a concern since glaucoma runs in my family) The drops are already working.

That's all I have for now! Hope you all have a fantastic week.