Monday, March 30, 2009

Neurology Appt...and our next steps!


Well...we just returned from our appointment! Dr. Malik did a great job going through everything with us. He even took us in the other room and went over the MRI. After further review, Kendall is not a surgical candidate. I guess I feel a little disappointed with this, since he made me think at first she was. The seizures are coming from both sides of her brain. Also with the added risk of Factor V, the risks outweigh the benefits for her.
On a positive note (at least in my mind) her MRI shows two Porencephalic cysts...a bleed on both sides, but structurally everything else is in tact. Now, I feel safe saying her main diagnosis is Cerebral Palsy. She will develop... just delayed. He said she will probably have a left sided weakness, but could not predict her future. No "life expectancy" was given! In a weird way, that makes me feel better. We just need to be patient with Kendall. And these darn seizures need to stop!
So, the plan to stop the seizures: Since we are still not at the max dose of Keppra, we will be increasing that, since the Topamax hasn't ever worked, we are decreasing it. After 10 days on max dose if we don't see any improvement, we will start Vigabatrin. (they are calling a pharmacy in Calvary?? if we can't get it there, Mexico.) Then, if that doesn't work, ACTH. Justin seems relieved we have a plan. I'm relieved there's still 2 more options before ACTH. Kendall's still her happy, giggly, sweet self...with annoying seizures!
I'm off to Kam's Open House...and tomorrow we have therapy early and blood work to check the medication levels after that! Justin will be out of town all week on business and I have a ridiculously busy week with work too! Keep us in your prayers!
~This is a picture of Kendall enjoying the beautiful day yesterday after church in her Child Rite chair!

Saturday, March 28, 2009

The Littlest Heroes Project

I have this ridiculous obsession with photographs. I love looking at others' pictures and while I was pregnant with Kendall and couldn't sleep, I would surf the Internet at night and look at photography sites! I am always in awe of people who posses the talent (and patience) to capture great pictures...especially of children.

Anyway, before I knew about the journey we would face with Kendall, I looked at the website for The Littlest Heroes Project. So about a month or so ago, I applied...thinking it would take a while to set everything up. After viewing Megan Hamilton's Photography website, I knew she was a match. Her pictures are absolutely beautiful! (you have to check it out!) A few weeks ago I was notified that we were accepted and Megan would be doing our pictures. I totally thought we'd have to wait a long time....but she fit us right in!

I've really wanted a good family picture for a long time, but with our crazy lives, that seems next to impossible. Megan went above and beyond to make our photo shoot relaxed and comfortable. We had a great day as a family and felt "normal" for a while! Kendall was a bit fussy, so I was amazed at the pictures Megan was able to capture. If you have a chance, check out our pictures here!

Yesterday we ordered a pediatric wheelchair and bath chair. I knew the time was coming...and while we are really in need of these things, it was bittersweet. Kendall has a Neurology appointment on Monday (ugh...) so Justin and I will know our next plan very soon. My mom has an appointment with her Oncologist on Wednesday too... so MANY, MANY prayers needed for our family this week.

Hope everyone has a fantastic weekend!

Friday, March 27, 2009

Hot Yoga!

On a totally unrelated Kendall topic, I have a new addiction! I haven't been running much since the White Rock Marathon in December. I just haven't been motivated. But, things have been so ridiculous with work and Kendall, I decided I need to find another way to de-stress! So, thanks to my friend Jill, I went to Hot Yoga at a Yoga studio here in town. This was my first time attending, and I swear I sweat more than I have running outside in the Texas heat. And oh.my.gosh. let me just tell you it was 1 hour and 30 minutes of pure bliss. I felt so completely rejuvenated! This morning I woke up and my neck (which is usually completely tense from stress and driving) did not have one knot! So, I'm hooked.


Kendall has been giving me fits every morning and evening with her eating. She simply has lost all interest in spoon feeding. ALL of her medicine requires her to eat, so we are really faced with a dilemma. Since her swallow study was OK, Speech has suggested we start introducing other foods. More table foods like mashed carrots and potatoes with ranch dressing and ketchup. I'm hoping this will do the trick.

We do have some new things to share! I recently gave Kendall a sippy cup with a bit of juice in it, and she held it on her own!!! (her hands look fisted, but they aren't. The cup has handles!) Also, ECI brought us a switch toy. It's a cow that moos and wags his tail and walks toward her. As you can see, Kendall gave him sugars! She loves it! Also, our wonderful OT has been working on Kendall using her hands more. She started holding links and banging them together. She is actually starting to play!! So exciting! These are things we've been waiting for for a very long time!

That's all I have! Hope you have a fantastic weekend. Where did this week go???

Tuesday, March 24, 2009

Swallow Study

Well, we had a very busy day today. First Kendall had PT and did remarkably! After that we rushed home for OT and she had a really good session with OT too! She took a good nap, then we were off to the Swallow Study.

It was relatively painless. She refused to eat solid food..big surprise (sarcasm) She took about 22 sips of the barium. They were able to hear the "wheezy" sound she makes when eating while they were imaging. She also had 2 seizures during the study.

So...the results? Drum roll... she is not aspirating. It was a safe swallow. I wish that made me breathe a sigh of relief, but the Dr. quickly told me with children like Kendall, there is always a chance of decline. It was not a normal swallow...but it was in the normal range. She had an "intermittent delay in triggering swallow." and "10% laryngeal penetration." In those 22 swallows, "noaspiration was noted, and while congestion was audible, no residue or food was present in pharyngeal area or trachea." Not even during her seizures! So, I guess we're in the clear for now.

Whew. Now, if we could just get her to eat solid foods again without such a fight. I kind of think the taste of the medicine every time we feed her has caused her to dislike eating, but I guess the most important thing is warding off the darn seizures.

I made it though another stressful day with only one Hershey's bar! WoooHooo!!

Sunday, March 22, 2009

The Weekend

Sometimes, OK...a lot of the time, I think these numbers are reversed!!! Doesn't he just look thrilled to have his picture taken? I'm sure he'll be even more thrilled that I put it on my blog!! Oh, Justin! You are one of a kind...a man without a crowd...a gun-toting Democrat, a man of few words, the BEST two stepper, with the biggest heart, a very loving dad and step-dad, and unquestionably the love of my life! Happy birthday to the kindest most patient man I know!

And here's my wonderful father-in-law who has the same qualities...minus the man of few words part...ha! I love you, but if you ever leave a spit cup around and I drink it again, you're so fired.



We had a wonderful weekend...up until this morning when Kendall developed a stuffy nose and a fever. Boo. But the weather was beautiful and I really enjoyed spending time with my family. Justin and I went out for his birthday on Saturday night with friends and had a great time. Sunday Nonny (had a good picture of her and Kendall but the light was blurred...so we'll try again next time) and Poppy (pictured above) came over along with the rest of the fam to celebrate my big baby's birthday! We grilled steaks, and even though Kendall was feeling under the weather, she put on quite a show for everyone. She is such a sweetheart! Full of smiles and personality despite everything.
We have a busy week. Ophthalmologist appointment first thing tomorrow and speech after that. Then Tuesday is her swallow study followed by PT, and OT. Just another routine week of appointments and praying Kendall will eat so she can take her medicine twice a day. (B6, aspirin, Topamax, Keppra.) Please pray they don't find that she is aspirating on Tuesday. Enjoy your week and hug your babies!

Friday, March 20, 2009

Mother's Intuition...




We decided to take a family road trip to the farm. Kendall and I usually stay behind when Justin and Kamden go do "guy stuff." Justin's been itching to set up a deer feeder...or whatever you call it... in Oklahoma for a while now. So Kendall and I braved the wilderness because we love our boys.
Kendall and I were asleep in the cabin when Kamden went exploring in a newly built pond that hasn't filled up with water yet. I went out there with him the day before (took this picture...and laughed at my city dog who got stuck in the mud.) Well, Justin wasn't exactly supervising him. While I tend to be a little over-protective when it comes to Kamden running around out there, Justin isn't. He grew up out there and knows every square inch of the place. I grew up on the golf course, so horses, cows, coyotes, wild dogs, hogs, ticks..not so much my cup of tea. Anyway, I was asleep with Kendall and I had a dream of this little 7 year old boy who drown behind my parent's house about a year ago. In my dream the little boy was Kamden. I awoke with my heart pounding. In a few minutes, Chloe came running back to the cabin and pushed the door open, did a few circles, then ran back down by the pond. Justin opened the door to see Kam hysterical, covered in mud, and missing a shoe. Needless to say, he fell in the muck and got stuck. He was pretty upset. I cleaned him off, started the shower, and as he was getting in, I had to pull off a big tick that was stuck on his thigh. ugh! I think Kendall and I will stay behind next time! What I don't know won't hurt me! We did enjoy visiting Kendall's great grandpa, Aunt Donna and Uncle Norman though....so the trip was worth it.

Anyway, Kendall's seizures are about the same. The addition of the Keppra hasn't exactly changed anything. I will continue to be patient. My Dr.'s office called yesterday and told me my blood work came back abnormal. My Factor V was positive. (Justin's still not in the clear, since there's a good chance Kendall had two copies of the gene.) Apparently there may be some other "anticoagulant" or whatever abnormalities in me. My Dr. gets back on Monday and they are going to set up an appointment with a Hematologist for me too. Who knew?

We're looking forward to a fun weekend. Justin's birthday celebration is on Saturday night, and then the family party on Sunday. Can't believe he's almost 31!!!!! hehe.




Tuesday, March 17, 2009

video!

OK...I know the picture is a little dark again...but we wanted to share the highlight of our days with all of you!


video

Monday, March 16, 2009

Fun Stuff!

Well, fun in my opinion! My how my life has changed in the past 10 almost 11 months!

Over the weekend, I decided to give Kendall a biter biscuit. Not because she was ready for them (based on the criteria on the back of the box....she isn't.) She doesn't sit up, she doesn't even roll, and she's moons away from holding anything with her thumb and fore finger! But, I made an executive mom decision that after all she's been through, she deserves a freaking cookie! And she sure did enjoy it:

Sunday evening, Uncle Josh blessed us with his presence for dinner! He was in town from Kansas, and will be leaving for Tanzania soon. Kendall enjoyed being loved on by her Uncle as you can see! We enjoyed getting to visit with him and hope he has a very productive, fun, and SAFE trip!


And finally...Happy St. Patrick's day! Kendall wanted to pay tribute to her Irish Heritage in her Kiss Me I'm Irish t-shirt tonight! In this picture she is sitting in my glider, balancing quite well on her own.


Her smiles quickly turned to laughs and I was able to catch it on video. But...I am having trouble uploading it, so I will try again later! Hope you all have a great week!

Thursday, March 12, 2009

Keppra

Well, apparently, they had to cancel the meeting with all the Dr.'s to discuss Kendall's case. They have rescheduled it for next Wednesday. Dr. Malik says it is a top priority for him....hmh? Whatever....he decided to go ahead and start adding Keppra to the medication list. So we will slowly be adding that, then when that dosage is up we will start to wean her off Topamax. I guess we are now beginning the phase where you try every single medication until you find the right one? Let's pray Keppra is the one!

Here's a few pictures of Kendall we took this morning! Nonna had the cushion off on the couch and Kendall was kneeling. She did a great job, as you can see:


I love this profile picture!

And, this is a happy Kendall taken last night after eating a big meal! Kam thinks she looks like a Sumo wrestler! In her defense, those pj's are really thick!!! It was cold last night!

Hope you all are having a great week! Please keep praying for our baby girl.

Monday, March 9, 2009

We Meet at Last!

"I'll show you my MRI...if you show me yours."
"So, how's that Topamax working out for you today?"
"What's your therapy schedule look like this week?"

Oh...I could go on and on!!!



Last night, Justin, Kamden, Kendall and I all went over to visit with Jennifer, Mike, Emily and Jude! Baby Jude also had a stroke in utero and suffers from nasty seizures as well. We discovered that we don't live far from each other, and we actually know some of the same people...small world! But we have been talking since early on in this journey. They are a beautiful family! Jennifer was so incredibly sweet to have us over for dinner. Justin and I have commented before how the "Special Needs" parents always seem to be such a close knit group! Now, we totally understand. It is hard to find people who truly understand what you are going through. We feel so blessed to have gotten to know them! We are definitely looking forward to watching these babies grow up and prove all the Dr.'s and statistics wrong! Jennifer made the joke that Jude and Kendall are going to be like "Benny and Joon" in that movie... that made me laugh. Kamden developed a crush on Emily within the first 5 minutes...unfortunately for him, I don't think she's too into younger men! Anyway, we really enjoyed ourselves!

This morning Kendall had Orientation and Mobility at 8:30, then we rushed out for her to get 8 viles of blood drawn. We are now waiting on Speech therapy at 11:30, then after that we have to go get her ultrasound done on her leg at 2:30. So...another very busy day for Miss Kendall. Seizures were the worst they have ever been this morning...I lost count after 28 spasms. ugh. Hope you all have a great week!

Sunday, March 8, 2009

A Call from the Neurologist

Well, to start off with, Kendall's seizures have been particularly nasty this weekend. They are way more frequent than they have been. That said, we are definitely wanting to try something new. The Neurologist was waiting for the Hematologist appointment to decide the next step. Late Friday afternoon, he called to give me his plan...sort of. He said if I "can be patient" this Wednesday he is meeting with his team, including the Neurosurgeons to present Kendall's case. He said he has reviewed it in detail and thinks she may be a candidate to have that part of her brain removed. I know there is a term for it, I've read it on other's blogs, etc.. like recession or hemispherectomy or something like that. Anyway, he's concerned the Factor V could cause another stroke, so he's going to talk with his team to determine the plan. I'm a little nervous about this. Shouldn't they try some other medicine before deciding to cut into her?? I'm sure all those questions will soon be answered if I can just "be patient."

Despite the seizures, Kendall has been very smiley this weekend and in great spirits. She enjoyed a visit from her Aunt Kristin on Saturday:

And we were finally able to get a family picture:

Kendall pants loves being outside. Now that the weather is starting to get warmer, I'm excited to enjoy the outside with her. ECI is ordering her a bath chair that they say we can also put on the top step of our pool! I'm sure that sounds pretty simple, but to us it's huge! I'm finally starting to feel like we can do some "normal" things with her. Even being able to push her around in the jogger, or her entertaining herself somewhat in her bouncy chair is a huge accomplishment. For us, its a big deal to not have to hold her every time she's awake! This morning she actually found her pacifier in her lap and put it in her mouth! It took her a while...but she did it! Of course, I was cheering, then she smiled and dropped it again! Oh well, baby steps!

Friday, March 6, 2009

Happy Friday!

Ok...so I got out last night! Believe it or not! I went to spend a couple hours at a girlfriend's house to see pictures from her honeymoon and escape from my Kendall/work world for a bit! I had a great time catching up with them. I posted this picture because I know they read my blog, and I also thought it was HILARIOUS that Becky's dog jumped on Sarah during the picture and his big Boxer paw is in the picture. Sarah, Becky, Jill, I love you guys bunches, thanks for being great friends. Kendall slept pretty well last night. She only woke up twice to nurse. I also didn't see or hear any seizures throughout the nigh. Hopefully the increase in Topamax and adding the B6 is helping. Here's what she looked like before I left last night. Don't you want to eat her up?

And finally...I told Jennifer I would post a picture of the Special Tomato chair ECI brought us. It came with a base, but our PT at Cook's told us it can do a lot of thing, like fit in a big stroller. It actually fits perfect into my IronMan jogger. Guys, this is life-changing for me! Now Kendall can go on long runs with me whenever I want. No baby-sitter needed! Guess now I don't have a good excuse not to run long distances anymore. Well, maybe the fact she weighs almost 20 pounds is a good excuse?!?!

Anyway, hope everyone has a great weekend! And to all of my dear friends through this Blogging world...may we all have a great and seizure free weekend!!!


Thursday, March 5, 2009

Hematologist Appointment

Well, the appointment was uneventful. I didn't really learn anything I didn't already know. The Factor V was a definite factor in her perinatal stroke. There may have been some other things... and of course we are having more blood work done for that. Kendall will start on an aspirin every day. The Factor V is genetic. Either I am the carrier or Justin is or both. I will be getting my blood drawn too to find out, simply because it could effect Kamden in the future if I was the carrier. A lot of people have Factor V Leiden and don't know it. You wouldn't know it until something happens...i.e. stroke, blood clot, etc. If we had known from the beginning any of this, there wouldn't have been anything we could have done differently. (that kind of puts my mind at ease.) Kendall is at risk of having another stroke, but it is like 2%. If she were to have any kind of surgery they may start her on blood thinners, but that's really the only precaution. It simply increases her risk of having a blood clot. We are also going to have an ultra sound done on her right leg. It is a bit longer than her left one. A while back we had an x-ray done to rule out hip displasia. Now, she thinks that is the leg that could have had a blood clot, and so they are going to do an ultrasound to check out her veins. Something like that! I'll keep you posted on the results.
We increased Kendall's Topamax this morning, and starting tomorrow will be adding B6 to her daily routine too.
Thats all I have. Enjoy your evening!

Wednesday, March 4, 2009

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!

Tuesday, March 3, 2009

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.