Thursday, April 30, 2009

Swine Flu Freak Out!!

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Goodness, I'm just a blogging fool these days! Since Kendall has been feeling better (and now eating better) she has just let her little personality shine. I posted this video because, of course, I love her laugh, and also, I think she is seeing the pin wheel. Kamden worked with her this evening on tracking and I really think she's seeing. What do you think?

I cancelled Kendall's surgery next week and re-scheduled for May 20. Ft. Worth ISD is officially closed until May 11, and MayFest has been cancelled. (bummed about that, since that's something Kamden and I attend every year)all due to the Swine Flu. I dont usually get worked up about these things, but since any type of flu or high fevered illness can cause serious issues in Kendall, I'm a little more worried. Kamden's school hasn't been closed yet, but a lot of districts around us are. I think by the end of the evening they will as well. I just figured sitting in hospitals and waiting rooms next week would probably not be the best idea. I think it is definitely better to be safe than sorry.

Kendall's seizures were tough today. I called the Neuro and we are officially going to start on Vigabatrin as soon as it comes in. Hopefully this will work. It seems like she will be on a lot of medicine, but we have to do it. This is our last option before ACTH...so hopefully it will work.

We are going to move Kendall's crib into our room in hopes of beginning the transition into her own room. This is a big week for me! First weaning, and now moving her from our bed....I'm not holding my breath on this one though. She hasn't been sleeping very well at all lately. She sleeps soundly for about 2 hours and then to the minute is awake again. Wish us luck. We all need better sleep around here.

Wednesday, April 29, 2009

Nutritionist



In case you don't already know....Kendall is a stroke survivor! She had a stroke in utero. We don't know when but we have a pretty good idea of why. You can just read to the right to get some of the details or scroll down to my re-cap to get the whole story.

Thought I would post this picture in recognition of Childhood Stroke Awareness Day on May 2. There are a group of people over at the Pediatric Stroke Network who work very hard lobbying to spread the word that kids, toddlers, infants, even unborn babies have strokes. Hopefully one day, when my life slows down, and all of this truly sinks in, our family will be able to do more to help spread awareness.

Since Kendall had a stroke, obviously she faces challenges most children don't. Eating is one of those challenges. For me, breastfeeding has been a huge part of Kendall's first year. I breastfed Kamden, but not for a whole year. I'm not one of those over-the-top people who breastfeeds openly in say, an airport, or posts pictures of me breastfeeding on Facebook, but I would definitely say I'm opinionated on the topic. I believe employers should make it easier for women to breastfeed. I think working moms have enough obstacles to overcome in the workplace, and they shouldn't have to justify giving their babies the best nutritional start. I have opinions, but I wouldn't say I'm judgemental. I think there is a stigma attached to breastfeeding moms, just as there is for moms who don't breastfeed. To each his own. But for me, nursing Kendall gave me the ability to know I was giving her something research has proven is "brain food!" It hasn't been easy. It hasn't always been comfortable. But, it has worked for us.
Until now.
The Nutritionist from ECI was here yesterday and we discovered that Kendall has lost weight. She went from being in the 90th percentile to the 10th. Breast milk isn't cutting it anymore. She's not eating enough solid foods to sustain her either. So, we made the decision to start her on Pediasure in place of whole milk or breast milk. She will continue to eat, but the extra calories and nutrition she'll get from the Pediasure will hopefully give her enough calories to keep up with her therapy, seizures, and play. I know this may not sound too bad, but it is a step back for me. Kendall losing her eating ability has always been a big fear of mine. I spend a lot of time each day monitoring how much she eats, and feeding her. So in a way, I feel like we've failed...
If you breastfed your child for any length of time, you know stopping is hard both emotionally and physically. I feel like crying every time I think about it. I feel a disconnect with her during the day. (I'm going to continue the night time nursing) And, the pain associated with stopping cannot be explained in words. It's horrible. Please lift us up in your prayers this week...

Tuesday, April 28, 2009

Sibling Fun!

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Here's a video of Kendall and Kamden playing together! Kendall's issues aside, I always thought it would be harder for Kamden to bond with a sibling since he was 7 when she was born. They bond. Everyday. Kamden can make Kendall laugh like nobody else. He is such a good helper too. And yes, Kamden uses that voice all the time. He talks a lot, and his voice ALWAYS sounds like that. Now you understand why Justin and I can only take road trips with Kamden on occasion. Anyhow, it's another video of Kendall laughing...and I can't get enough of it! If I could bottle it, I would!

I have lots of updates about the Nutritionist and such, but since I'm still under the weather, I probably should go to bed!

Oh, by the way, I did create a montage of Kendall's first year. Its at the bottom of the page.

Goodnight!

Ho Hum

Well, I guess I should start off by saying I went back to the Dr. yesterday. My rash was worse. I knew the Dr. wouldn't know what was wrong. We went through the list of things I've eaten, etc. He ordered a strep test. I figured he was just trying to get his PM "push money" or spiff (If Dr.'s get those...don't thing they do though) on the test. So, I waited patiently and found out five minutes later, I do have strep. That's why the rash. He said my throat was really red. Funny, I was too pre-occupied with my uncontrollable itching to notice.

I immediately was worried about Kendall. Her strep test last week came back negative, but you know how strep can be... She had an appointment this morning for her immunizations. We never got them, because....no silly, she doesn't have strep. She has an ear-infection. So here we start on antibiotics.

Kendall still remains in the less than 3rd percentile on her head circumference. Its 16.25 inches. Normal size for ummm.... a 3 month old! She's 19 pounds and 30.5 inches long. Definitely long and lean taking after her daddy!

On another note...the Pediatrician said we could turn her car-seat around. She is in a big girl seat, but I still have it rear facing. I thought I read somewhere that when their head control is lacking, you should keep them rear facing? If any of you guys knows anything about car seats, please advise!

So we keep trucking as always. They will re-check her next Tuesday, but I think there is a strong possibility her surgery on the 6th will be postponed.

So, ho hum.

Monday, April 27, 2009

A Birthday Message From Daddy...



Happy Birthday Kendall! I can't believe my monkey is one year old today. I couldn't be more proud of you and I could never express my love for you in words so I won't even try. You have been through a lot this year and still face the unknown with a smile. Oh that little smile! It has the ability to instantly cheer me up and is more contagious than the swine flu. That little smile reminds me that it doesn't matter what hand we are dealt in life, it only matters how you play it. I am proud of the little girl you are turning into. You have taught me a lot about what is really important in my life and I am a better person because of you. For me, life is about the journey with those you love and I want you to know that whatever the future holds, your family will be there for you always.

Love,

Daddy

P.S. Jocie, things are hard sometimes and some days my best isn't good enough, but don't ever doubt how much you mean to me or how much I love you.

Sunday, April 26, 2009

Birthday Party











Well, our baby is almost one. We celebrated Saturday evening at our house. All of our friends and family joined us in the celebration. Kendall thoroughly enjoyed her cake and the big kids were able to swim (don't ask me how...that water was freezing!) Kendall was showered with gifts. Among them, a tray for her Child Rite chair, a special needs swing with a cover for outside,(we still haven't figured out how to use the straps, but we may be able to strap her Special Tomato chair in it) a beautiful bracelet, light up toys and musical toys, and enough designer clothing to sink a battleship. My friends, mother-in-law, and sister definitely share in my love of clothes! And now Kendall has a bathing suit for each day of the week this summer! Kendall kind of just stared at her "smash" cake, but once Grandaddy put his finger in the icing and put it on her lips, she was a hooked! I didn't get the greatest pictures since I had so many other things going on, but my friends got some good ones, so I will post them when I receive them!

I had big plans of creating a "year in review" today with pictures, music, and commentary. However; at some point during the weekend, I must have come in contact with something I'm allergic to, because I broke out in hives yesterday morning on my hands. By the evening, it spread to my elbows, and this morning, I was covered head to toe with red splotches that itch like crazy. SO.... my Sunday has consisted of driving to the clinic, discovering that since I'm STILL breastfeeding, I can't take anything, and soaking in an oatmeal tub followed by applying anti-itch cream over and over again. I love my life. I don't have the patience for uploading pictures right now. Her birthday isn't until tomorrow, so I guess technically I still have some time!
Its been a very lazy Sunday around here. This week was tough with Kendall being sick, then Justin and I getting the same stuff. Hopefully we will catch up on our rest in time to start all over again next week. Kendall has a full week with therapy. We also have a Nutritionist coming to talk to us. Tuesday she will get her one year immunizations. And I am going to start the much anticipated wean during the day of Kendall from breast milk to whole milk. I'm not sure either one of us are ready for the night time nursing to cease just yet. Please keep us in your prayers.

Wednesday, April 22, 2009

Grandaddy!


It was brought to my attention that I have only mentioned Grandad (my dad) once on this blog. I couldn't believe it...so I went back and checked. Apparently its true! Hard to believe because my dad is such a huge part of our lives. We see him EVERY day. Multiple times a day! So, I couldn't go another minute without paying tribute to him!
My dad ("Ed" as my sister calls him) is the most interesting, smart, compassionate, and generous man I know. He has always lived his life with a positive outlook on everything. He has always been there for my sister and I. Growing up, he was the dad all of our friends loved. He has an uncanny ability to make friends with everyone. He worked very hard all of our lives to provide for us, and enable my mom to stay home and take care of us. On weekends he attended my sister's piano competitions and my swim meets. He handled living with three women with such ease! Putting out fires left and right, and always the mind of reason. He worked hard (and with the help of my mother handling the finances) put my sister and I through college without any student loans! (Something I am sooooo grateful for!)
He was always there for us. And he still is! When I was raising Kamden on my own, it was my dad that jumped at every opportunity to help me out. He mowed my grass every week, washed my car (Ok, he still washes my car) picked Kamden up from school, walked my dog!! He is an awesome grandfather. He hasn't ever missed anything of Kamden's either....from school plays to Thanksgiving feasts to field days. He continues to pick him up from school every day and take him to karate. He is a huge help during the week. He
And he has been great with Kendall too. He loves her so much. He comes over to visit her, like I said, every day! He also helps out when my mom needs a break. At first, I think he was a little afraid of her, but now he's good! I have never laughed so hard in my life watching my dad change a dirty diaper. He's all thumbs and when he's really concentrating he sticks his tongue out. He also tried to put her onesie on over her pants. He is a goofball. Oh, and I almost forgot...(my mother will be so thrilled that I posted this) he got a tattoo on his arm in honor of Kendall (without consulting anyone!) That's my dad!
My dad is not only an amazing man to his family, but to the community as well. In his retirement, he fills his time with working in the church, working with the youth groups, volunteering with the city Police Department in the Victim's Assistance Program. He also attends multiple meetings a week with AA helping others achieve the sobriety that he has had for 40 some odd years (sorry dad...don't know the exact number.) Needless to say, he is a very giving person. I admire and respect him so much.
And, he's just so freaking fun to be around. Don't get me wrong, Mr. O'Rourke can have an Irish temper, and he's not really a morning person. But, he makes me laugh on a regular basis. He definitely takes everything in stride.
I will never take my dad for granted. I have a lot of friends who have lost their fathers or never really grew up with them around. But, I have been blessed. My dad is amazing.
So, Dad...I love you. Thanks for all you do.

Tuesday, April 21, 2009

Never a Dull Moment


So, I've come to accept...finally...that nothing in my life is going to go as planned! Take tonight for instance. My beautiful, smart, loving, kind-spirited 8 year old had his debut in his school play. This role of "Cashew" was one that he practiced for, auditioned for, and was very excited to obtain. Out of 180 2nd graders, Kamden was the only one with 2 speaking parts, a solo, and dance routine. As he stepped onto the stage, my heart was beating a mile a minute. I was so nervous for him to speak on a microphone in front of so many people in an auditorium! (I know first hand how stressful that can be) Nervous mostly that he would freeze (like I did at cheer leading tryouts in the 9th grade) and forget his lines. Afraid that he would trip and fall (like I did at Homecoming in 10th grade) or start coughing uncontrollably (like I did at a business dinner at a fancy restaurant with customers a few years ago.) Clearly, my own experiences and negativity made me have a difficult time enjoying the program.
But that's not what happened.
No, my precious 8 year old didn't forget his lines. He didn't trip or cough. In fact, he prompted another little girl who wasn't where she was suppose to be to get where she was suppose to be, just like the little director he always is. He stood up there with confidence and enthusiasm and spoke clearly and slowly just as he had practiced.
You see Kamden, as I've mentioned before is an amazing child. He is very gifted. He does what most gifted kids do when they are not challenged. He gets bored. No, he didn't talk through the boring songs, or push the little girl next to him (as he had in pre-school.) He wasn't day dreaming to the point he missed his own part. Worse.
Kamden...
did something I didn't even know he did anymore....
He picked his nose for a really long time. Over and over again... for what seemed like a decade. I grabbed my sister's leg, begging for her to tell me my eyes were deceiving me. I looked around trying to make sure all the lit up video cameras were not capturing this....
But there he stood. All confident and in his own gifted world. Picking the heck out of his nose. You're probably thinking that's kinda funny. Well. It wasn't. Because not only did he pick his nose...
He also ate it.
Yep. He really did. And not just once. A bunch of times. I have absolutely no clue why. I guess I'll never know. Before I began my career in sales training, I was a 3rd grade teacher for 5 years. I loved every minute of it (except the pay.) But the one thing I don't miss is kids who pick their nose and eat it. It actually makes me gag. Seriously gag. And now, here's my son, doing just that in front of a packed auditorium.
So yet again, I raise my hands up in the air and ask...really? Really.
On a Kendall note, she's eating again. And I have my amazing friend Jill to thank for that. Jill's calling in life is child care. She runs a home day-care and also helps others in our city to become registered as well. She really knows her stuff when it comes to babies. She's helped me on more than one occasion with Kendall. And bless her giving, loving heart, she pureed strawberry banana smoothies and froze them in ice trays for Kendall today. She also made mashed potatoes. She dropped them off this evening and Kendall ate like a pro. She loved every bite. She was also able to take her medicine and only threw up once! Thank you soooo much Jill.
OK... hope you all have a great evening.

Sunday, April 19, 2009

New Bath Chair!

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ECI brought us a loaner bath chair until the one we ordered arrives. Kendall loves it! She outgrew her other bath chair quite a while ago, so we are thrilled to have this one. Bath time has always been Kendall's favorite thing. She loves to splash and the water really relaxes her. We plan on swimming a lot this summer. She has no choice in this family. We were all water babies...everyone on my side of the family at least. Justin grew up swimming in a creek. One with muddy water and fish and even snakes!?? ugh! No thank you!

Unfortunately, Kendall's cough has progressively gotten worse. On Saturday she was very cranky and wouldn't eat anything. Giving her her medicine is becoming harder and harder. She has started throwing up after every dose. Then, I don't know what to do, because I don't know how much actually went down. Her Keppra gags her and then she throws it up...and the cycle continues. There has to be a better way. We spend close to 2 hours in the morning and 2 hours in the evening each day trying to administer the Topamax, Keppra, B6, Aspirin, and Folic Acid. When she's not feeling well, its even worse. This morning, I ended up putting her in the bath to get her to eat again. Hey, you do what ya gotta do sometimes, right?

Anyway, her eye muscle surgery is scheduled for May 6th. I called to schedule that appointment and ended up with 4 others. We have to go back to the PO because it will have been longer than 6 weeks since we saw him last. Then, we have to go to the hospital for a pre-op since Kendall's diagnosis is so extensive...then the surgery, then the follow up. I really do need to invest in an apartment closer to the hospital....

Speaking of downtown, we went there today for the Ft. Worth Art's festival. We saw the world's largest string instrument. The band that played it was very eccentric, but Kamden enjoyed it. Kendall seemed to enjoy being outside and out of the house. Downtown Ft. Worth is one of my most favorite places. Justin and I had our first date at a wine bar on Main Street. I have a ton of memories down there. I love 8.0's patio in the spring and summer for Texas Country concerts! And I absolutely love the Christmas lights in the winter. It is so safe and easy to navigate. And parking is free! I'm so totally a Ft. Worth girl and not a Dallas girl. We had to laugh today though, since there are so many new restaurants, apartments, and bars. It totally proves how our lives have changed since Kendall's birth. We didn't even know some of those places existed. Hopefully we will have a chance to go on a date soon....(hint hint...Justin....my birthday is right around the corner.)

And speaking of birthdays...Kendall will be 1 in a week. Gosh, seems like just yesterday OK, maybe not. Actually this has been the longest most stressful year of my life! But, I think we've done OK.

Thursday, April 16, 2009

Occupational Terrorist?!?!


Its been a crazy few days. Kamden stayed home from school on Tuesday and Wednesday. He's had a pretty bad cough and mild fever for a few days. He finally went to school today, but still has a nasty cough. On Tuesday evening Kendall developed a fever, but didn't have any symptoms. She seemed a little crabby, and the 102 fever took it all out of her. Justin took her to the Dr. this morning and they said she didn't have an ear infection and her throat looked Ok... so she may have just had a little virus. He said not to worry unless her fever continues. Tonight the fever is only 99 but she does seem to be developing a cough...I really hope the tough part is behind her...
Anyway, Wednesday Kendall had OT scheduled to come to the house early in the morning. I didn't have her phone number to cancel on Tuesday evening, so she showed up at our door early. Kam opened the door and yelled to me..."the therapy Dr. is here." I laughed and explained she was the Occupational Therapist who was going to help Kendall with her fine motor skills. We recently added OT, and this was only our 3rd time to work with her. I explained that Kendall was a little under the weather and apologized for not getting in touch with her. She insisted she stay and work with her....so who was I to argue?? This OT is incredible. She got Kendall to hold two things together and pull them apart. Kamden was fascinated by everything. He went over the paper with me and all the exercises we should be doing with her. Tonight, he said "Mom, but the Occupational Terrorist said we should let her choose!" I laughed!
The above picture was taken tonight while Kendall and I played on the floor and Justin and Kamden played their video games. Nothing like family time on a Thursday night! (totally worth skipping the gym for!) Isn't she getting big? Time flies!

Tuesday, April 14, 2009

Easter Pictures

We had a great Easter! The Easter bunny came before church. Kamden helped Kendall find hers and was so excited that the Easter bunny brings Bakugan AND candy! The whole family went to church together and enjoyed a beautiful service. Kamden was just as excited about Kendall's basket as he was his own.




Nonny, Poppy, Nonna, Grandad, Uncle John, and Aunt Kristin all came over for good food as well. We enjoyed the afternoon spending time together.

Justin and Kendall took a nap after the big meal:

Kamden and his best buddy next door enjoyed an Easter egg hunt...until he got the Easter egg Kamden really wanted...then Kam had a meltdown. And the fun was over.

All in all, it was a nice, memorable day with lots of calories and fun! Hope you all had a great day too!

Sunday, April 12, 2009

Friends

This morning I was reading Barbara's post on TherExtra's and she posted this video. I guess I missed the memo on this "popular" song. It is so not the style of music I like...but when I watched it this morning it really touched me. Pause the music at the bottom of my page and click the arrow....then read on!
On Saturday we did the Race for the cure in downtown Ft. Worth. We were part of the Rack Attack team (as you can see on the shirts) It was a great day. Our friend Carmen was recently diagnosed with breast cancer, and my friend Theresa organized this group to walk in honor of Carmen. She is one of the sweetest people I have ever met, and we wanted to let her know she is surrounded with love and support as she braces herself for this fight.
After the walk, we went to BBQ and had a great time. I was reminded once again that my friends are there for me no matter what. I have said before, I am soooo blessed to have an amazing group of friends who accept me as I am! Kendall spent the day with us as well and she was just one of the girls. I have no doubt that as she gets older, she will have many more opportunities to hang out with my dear friends. These friends are like family. (dysfunctional at times...but always there no matter what!) For that I am so grateful. Love you all! (thanks for letting me win in my "solo" dance off...if those videos get posted on YouTube, I will hurt someone!)

Wednesday, April 8, 2009

A Recap! A LONG Recap!

Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.

I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid, is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.

My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.

At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.

Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.

The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.

At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.

She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was in tact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.

She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!

At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.

At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.

The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.

A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how other's with similar diagnosis cope day to day.

So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.

Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!

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When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...

Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off.

Go Kendall Go!

Saturday, April 4, 2009

Beeping Easter Egg Hunt














This morning we headed out for a beeping Easter egg hunt in Ft. Worth. As we were getting out of the car, I saw a baby that I recognized! As I rushed out of the car (and Justin rolled his eyes) I got to meet the precious Caleigh (from Caleigh's Corner) in person. They are just as sweet in person as they are on their blog! And we were able to capture this cute picture of the girls before the egg hunt.
Of course the egg hunt was a bit over Kendall's head, but she seemed to enjoy being outside and listening to all the chaos. Kamden had a fantastic time bouncing on the bounce house and Justin enjoyed talking to all the sorority girls. (kidding...well kinda)
It was a good time and at least I didn't have to take the kids to the mall to get a pic with the Easter Bunny!
I have a big meeting to launch new product tomorrow night so I will be working all day tomorrow and Monday. Our theme is a rock concert and I have to dress in rock star attire!?!?! And pretend to play the drums. Thankfully I practiced while playing Rock Band with Kamden and Justin til late (Kendall was our back up singer) Kamden is going to help me shop for sparkly makeup and colored hair extensions. I love my job....wish me luck.
Hope everyone enjoys their weekend!

Thursday, April 2, 2009

Kendall Says...

Well, I am pleased to announce my husband made it home from his business trip early, Kendall has been eating and taking medicine like a champ, and she is starting to babble. I mean really babble. Some of my girlfriends were over last night and they heard Kendall saying "hey da da" over and over! So, of course I called Justin to let him hear! She is also starting to say bbbb along with her usual agggooo. It seems like she is doing it with more purpose than before! I am so thrilled.

She has not been sleeping at night at all. Maybe it is the increase in Keppra?? Or maybe the cough I've developed over the past few days kept waking her up. I dont know, but she woke up every hour on the hour last night. When Justin's out of town, Kamden sleeps with me and he snores, so between the dogs and Kamden and Kendall, I didn't sleep much. Oh well! (it certainly isn't because I don't have a mattress that reduces tossing and turning caused by pressure points...providing the ultimate in spinal alignment, pressure relief, and proper back support...)But now that Daddy is home, maybe I will get some rest tonight. (yeah, right!)

But here is my angel without her glasses talking away! We have decided since she has to have an examination under anesthesia soon for her eyes, we are going to go ahead and have the muscle surgery to straighten out her right eye. The down side is it may not work completely...but heck, it certainly can't get much worse! Poor baby! They are scheduling the surgery in the next month.


Finally, in addition to my sweet baby's new vocabulary, she is also working on some sign language. In the picture below, she is signing what she'd like to say to those seizures, therapists who make her work, dogs who bark too loud and startle her, etc...

I know, I know...I'm bad. Please don't report questionable content!