Friday, February 27, 2009

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?

Wednesday, February 25, 2009

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.

Tuesday, February 24, 2009

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.

Saturday, February 21, 2009

Wow.

You are not going to believe this. Our Pediatrician called early this morning (saying he couldn't sleep all night worrying about Kendall) He said since she still wasn't eating, wouldn't open her eyes, and was crying non stop we should take her in to the ER. He called ahead and we didn't have to wait at all. The Dr. on call immediately saw us and examined her. They were about to order a CT scan, I guess scared she had some more inter cranial pressure....then he decided to check her eye under the ultra-violet light with some dye drops in both eyes. Low and behold, as if the child hasn't been through enough, she has a very large corneal abrasion. (scratch on her eye.) Apparently they are very painful (according to Justin who had one when Chloe scratched him) And she was in severe pain that's why she was vomiting and won't eat. We spent all day there, and after a stomach x-ray and more blood work, we were sent home, told to discontinue the antibiotic and given medicine (lotion) that has to go in her eye three times a day. It may take a small army to do that. They probably thought we were crazy when we breathed a sigh of relief...she really doesn't use that eye much anyway! kidding.
So no sinus infection, no aneurysm, no pneumonia, no blocked bowel or obstruction in her belly, no stroke, no increased seizures...just a scratch on her eye ball. I'd say this day turned out OK.
We have a follow up with the Ophthalmologist we "cheated" on this Monday. I guess I'll have to come clean about the second opinion...

Friday, February 20, 2009

OMG

Seriously. Kendall was awake all night last night. This is not an exaggeration. She woke up at 12 and cried non stop until 1:45. They she woke again at 3, then 5. I knew something was wrong, so I gave her Tylenol. I needed to get to work so my mom came over. About 45 minutes later my mom called saying Kendall hadn't opened her eyes and something was really wrong. She was going to call 911. SOOO...I ran home, picked her up and we went to the Dr. AGAIN.

I filled Dr. Carlson in on all the Factor V stuff and he was perplexed. Then, he examined her, did a flu test, left, looked up Factor V,then came back. She did not have the flu, he came to the conclusion she has a sinus infection. Low fever, very irritable, some drainage, etc. My mom insisted he take a better look at her eyes. When we saw them we about fell on the floor. They both were blood red. Apparently he thinks this is still part of the "sinus infection." He prescribed some antibiotics and eye drops. We were finally able to get her to take her morning dose of Topamax at 2:00. I'm not totally convinced its a sinus infection, but we'll stay the course for now. They said if she acts abnormal for another day to take her to the ER. Seriously though, she won't stop crying when she's awake. And her eyes are very swollen and she has dark circles under them. (SO DO I!!!)

Want to know the really crazy thing? She hasn't had but 2-3 seizures today. Hmh. weird.

Have a great weekend.

Thursday, February 19, 2009

Quick Update

Today has been a really busy day, and we don't have any "official" answers yet. (I knew we wouldn't until after the weekend.) But, her EEG went great. She had about 5 seizures in the waiting room and several during the EEG. Needless to say we won't be surprised when the EEG still shows Infantile Spasms.
You know you've visited a Neurology department too much when the receptionist comes out to hug you and ask how the baby is doing! We have also had the same EEG tech on more than one occasion! Fortunately today it was our favorite girl.
The nurse called today and said the hematologist wanted to review Kendall's file and I should call on Monday to find out when we will be seen. My guess is Dr. Malik doesn't want to move forward with any aggressive treatments until we get the blood clotting disorder figured out.
I'm sure we will have more information on that after the weekend.
Thanks for all your prayers the past two weeks. We aren't going to give up hope! So keep those prayers coming!
Oh, and I have to brag on Kamden. His ITBS (Iowa test of Basic Skills) results came in yesterday and he is above the 99th percentile for his age on everything! (being a former public school teacher, I know those tests don't always give a true measure...but I'm always amazed with him!) I mean really, how does the child not remember to go to the bathroom when he's playing video games...but he can explain global warming??? Oh yeah, I forgot " the brain is an amazing thing, it can re-wire itself and is very unpredictable...every child is different."

Tuesday, February 17, 2009

What next?

Wait. I really don't want to know.

Today Kendall's new Neurologist's nurse called back to tell me the results of the blood tests. It turns out the Factor V (which I referenced before could be the cause of the stroke...but I "doubted" it would be so easy) was abnormal. They are now referring us to a hematologist.

I have mixed emotions about this. I am so frustrated that it has taken so long for this test to be done. It seems to me that when the first Neurologist saw her brain and mentioned the word "stroke" they would have immediately run some sort of clotting tests. I'm definitely not a Dr. but to me that made sense. Why then, did they not do the tests back when she was 5 months old? I assure you it was not from a lack of me asking. I have a little book that I jot all my questions down in for the Dr.'s. I have the same question written down at 6 different appointments with 6 different Dr.'s. None of those Dr.'s ever ran the test. There is something wrong here.

Second, the thought that if they caught this earlier, Kendall's stroke could have been prevented by me taking an aspirin a day?? takes my mind in a direction I don't need to go in.

There is a possibility I could be the carrier and Kamden could also have the disorder too, it just didn't effect him the same way. There is also a possibility Justin is the carrier. I'm sure we will be getting blood drawn soon as well. Like we have time for 3 more appointments! gosh.

If we know the cause of Kendall's stroke we have a better chance of knowing whether or not it could happen again. Plus, it will be important to know if Kendall ever has surgery, etc. Also, I guess it could affect our health as well. I don't know. The only thing I do know is I AM SICK AND TIRED OF FINDING OUT ABOUT NEW MEDICAL ISSUES I NEVER KNEW EXISTED. I don't want to read anything else. I don't want to speculate anymore! Everything we have been diagnosed with seems to have ridiculous odds. 1/3000, 1/20000, 1/a MILLION??? I need to play the freakin lottery.

We had OT early this morning, and blind services visit after that. Then we had Speech come to the house and they couldn't work with her since she hasn't had her swallow study. Hopefully by next week we will have been worked in for the swallow study. Tomorrow is another busy morning, then the EEG on Thursday. I need a vacation.

I'm off to bed.

Sunday, February 15, 2009

Another Weekend!







"All I have seen teaches me to trust the Creator for all I have not seen." ~Ralph Waldo Emerson

Our wonderful Valentine's Weekend ended with a boom. (literally...about twenty minutes ago Justin backed his brand new truck into my mother's not inexpensive car.) Up until that, we had a great weekend. Cooper finally received a hair cut on Friday. Thought I needed to redeem myself. Unfortunately since Valentine's Day fell on President's Day weekend and President's day weekend seems to be, for some unknown reason, a really big time to buy furniture and mattresses... I had to work, leaving Justin to care for Kendall all day on his own. As you can see from the picture above, they bonded.
When I got home, we went over to Nonny and Poppy's house for a delicious steak and shrimp dinner! My favorite. Then, we left Kendall to spend the night with Nonny and Poppy. This was only her third time away from us overnight. Justin and I enjoyed our alone time at our favorite spot in town for a drink and came home to much needed uninterrupted sleep! Thanks to Nonny and Poppy for the break!
This morning, Justin and I stopped by the gun show in Ft. Worth on our way to pick up Kendall. Yes, I went to a gun show. I went to a gun show because that is the kind of wife I am. I wanted to get a glimpse into my husband's world. I wanted to share in his love of hunting and shooting. I wanted to broaden my horizons by walking up and down isle after isle of weaponry. I wanted to relish the experience of freshly smoked unidentified meat. I wanted an up close and personal look at neatly displayed Confederate flags. I wanted to watch the elite society of people who wear camo pants with camo shirts and push their guns around in their empty baby strollers. I want everyone to now know that is something I will NEVER do again.
As far as Kendall pants goes, she continues to smile through her seizures. They haven't really gotten better, but they haven't gotten worse. They are still there though, lurking around every corner. Sometimes I think it is harder on me than her. Every time one of those monsters sneaks up on her it takes my breath away. This Topamax has approximately 4 days to work. Thursday she gets another EEG and if the hyps. are still there, we take the next step. I pray they disappear by Thursday.
Have a great week. Stay away from gun shows.




Thursday, February 12, 2009

Sympathy Pains

"The chief handicap of the blind is not the blindness, but the attitude of seeing people towards them." ~Helen Keller


Our lives have been crazy this past week. Amidst the turmoil of our new diagnosis, Justin is out of town on business for 2 nights this week and my work has been crazy busy. Somewhere along the way this past week, I have developed an eye situation. Kendall's Orientation and Mobility teacher said maybe I have sympathy pains for Kendall...and she might be right. I'm not sure if it is stress, lack of sleep, or too much computer, (or a combination of all three!) but my right eye keeps turning in and going blurry. I have an Ophthalmologist appointment in 2 weeks. At first it was just when I look at my computer screen, now it's the phone, or anything. Probably not a good thing when you drive as much as I do during the week! I've had big head-aches too so I thought I was just getting sick, but it's more annoying than painful.

Anyway. Like I said, our lives have been crazy the past few days. Kendall's cough got better, then worse, then better. We did go to our pediatrician to make sure it wasn't in her lungs or ears. Thankfully it wasn't. He said it was an upper respitory infection, probably Mountain Cedar. Allergies? Whatever. I'll take that instead of pneumonia or RSV. He didn't want to put her on any antibiotics or cold medicine because he thought it would interfere with her seizure medicine. Sometimes I think he's a bit kooky, but as long as he can tell me there isn't fluid on her lungs...I'll take it.

We are now officially enrolled in MDCP. We bypassed the wait list by staying the night in Granbury in a nursing home Tuesday night. The nursing home was actually OK. They had us back in the Medicare wing, so it was fairly quiet. Half way through our 8 hour stay, Justin and I took Kendall into their little living area. Nobody was in there, and we watched TV and hung out in the cozy room. Just like home! Oh, except the fact some poor old woman with "sundowners" kept screaming "HELLLLP ME!" At first I was worried, but when I saw the nurse check on her a few times I figured it was probably the norm. Then the "HEEELLLLP ME!" turned into "HEELLP ME I GOTTA SH*T!" Over and over and over again. It did provide comic relief for a while. Then it was just plain annoying. They ended up moving her. When we first got there there were a few kids at a table eating. Most of the people were older, but there were a few younger disabled children too. That was heart wrenching. We have added going to a financial planner to our to-do list so we can make sure Kendall is in a nicer place when we're gone. As Dr. Marks put it, we need to start planning for long term care rather than college. Wow.

So, Kendall has a Medicaid number now, secondary to our insurance. I already ran into some difficulty though on Wednesday when our pediatrician's office said she doesn't file secondary insurance. I'm sure I'll get all that worked out eventually. At least we won't have to pay $130 every 2 weeks for medication, or $35 every time she has a therapy session. I feel like I just got a raise.

As far as the seizures go, they are still there. They are less severe and less frequent, but still there. I will increase Topamax tomorrow. Please keep praying for us.

While Justin is out of town, my sweet Kamden has really taken the role of "Man of the house." He actually sung Kendall to sleep last night. He is so precious. He will be testing for his gold belt on Feb. 24 in Karate. I am very proud of him. He sleeps with me every time Justin goes out of town. Last night it was 2 dogs and 2 kids all snoring. I need a better 6... (I'm sure only my sealy peeps will understand that one!)

I'm sure I have more to fill you in on, but the words are blurring together again. Thanks to everyone for all your sweet Facebook comments, e-mails, and phone calls this week. I really feel blessed to have so many amazing people supporting us. (and now uncle sam!... which by the way I have absolutely NO shame accepting! God knows we've contributed our fair share....and I've always been an outspoken Democrat, surrounded by Republican friends, so that makes it OK too! right? )

Sunday, February 8, 2009

Confession!

Before Kendall...
After Kendall...

I have to admit I have neglected my first born since Kendall joined the family. Cooper seems to have been hit the hardest. We got a post card in the mail Friday stating his shots are past due too. Cooper also suffers from epilepsy. His "miracle" drug is Phenobarbitol. Unfortunately for him, I haven't given it to him consistently in probably over a year...but he has remained seizure free. (I'm actually being serious)
And Chloe, our satanic black lab who used to eat everything she came in contact with including my memory foam mattress, Ray Ban sunglasses, Justin's Maui Jim's, etc.? Well, I never really gave her much attention to begin with, so no love lost there. It's amazing how quickly your priorities change. (before you call animal cops, please know Justin loves Chloe, and my dad walks them on occasion too!)

Kendall had a few clusters today, but we are going to be patient. Her cough has gotten better, and she slept well last night.

Have a great week everyone!


Saturday, February 7, 2009

New Diagnosis

Well we're home. We ended up in the hospital a little longer than we planned. Kendall was a champ. When we went in to get her electrodes glued to her head, she choked and vomited all over her clothes, blankets, everything. From there she started to have a runny nose, and as chance would have it, she developed croup during the night and had to have a breathing treatment. (I guess it was both a blessing and a curse that she got sick while we were in the hospital! If we had been home and she sounded like that, I'm sure we would have ended up in the ER anyway!) I guess they treat croup pretty seriously in the hospital now, as we were in a room with signs all over the door stating everyone who entered needed a mask and a gown and had to enter through a different door so the rest of the hospital wouldn't get infected?? I thought croup was just a cold and the throat swells resulting in the "barking seal" cough?! I guess its changed since Kamden used to get it every month when he was a baby! Anyway, we made it through and are home now!
The Dr. on call was Dr. Malik. He is an epileptologist and a neurologist. He is also the one who read her VEEG's the past 2 times. When before there were just "pre-emergent" hypsarrythmias, now they are full force. We now have an official diagnosis with Infantile Spasms. More on that in a bit. I wish I could say I am surprised, but I'm not. Dr. Malik came in on Thursday night to explain to me that he has followed Kendall's case and knew she would eventually have Infantile Spasms. Not sure why they never told me that to begin with?? He also told me that "children like Kendall will aspirate" and he ordered a swallow study. He said now with the Infantile Spasms added to her list of diagnosis, there was another blood workup he wanted to do. They proceeded to take a TON of blood from my poor baby. I asked the tech what they were testing for and she read off the list. A factor V (which is a coagulation test...possibly could explain what caused her stroke to begin with if she has a clotting problem...but I highly doubt it is that easy.) They also tested for Metabolic disorders (which we have already had tested....so i guess there are more of those as well.) Kendall had all of her genetic testing done when we were at the Geneticist a few months ago. (including the Micro-array) Anyway, a whole other list of things were added including a urine test too. We go back to Dr. Malik in 2 weeks to discuss the results.
Before we were discharged, we had a team of people (dressed in their gowns and masks) come in to talk to us about our future. They kept referring to Infantile Spasms as a "chronic illness." I hadn't heard it referred to in that manner before, but I guess its just semantics. Anyhow, in a very somber tone, they explained that Infantile Spasms is a very rare, catastrophic, seizure disorder that can have devastating results. She sensitively explained that in a lot of cases, the children end up with physical impairments and mental retardation (hate that word.) They probably thought Justin and I were the most cold hearted people in the world cause we both kind of looked at each other like um, we already expected that and have come to terms with that based on Kendalls MRI, and our last Dr.'s "call a spade a spade" attitude. The problem here is, Kendall already has a ton of brain damage. I looked at the MRI pictures with the Dr. again, and had a shocking reminder that she has 2 big cysts already in her brain. If the seizures continue, more damage will occur. This means, she could lose skills she already has. Sure, she's very developmentally delayed already, but she can suck and swallow, breathe on her own, and has a darling personality. If these continue, those skills will inevitably go away too. THAT was my biggest fear. I also learned that 1 or 2 of these spasms in one day is as damaging as 150. They HAVE to go away completely.
So, how do we make them go away completely? Well, my first answer to that is lots of prayer! I'm calling on each one of you to add Kendall to your prayer chains. All of them! Stop right now, and say a prayer for her! Every church in this town will know Kendall's name if I have anything to do with it. Second, we will start increasing her Topamax. This Dr. didn't agree with the dosage from the Dr. at Children's, but he does want to increase it. If we still see them by the end of the week, we increase some more. Third, if we still see them, we will talk about other more intense treatments (shots for 8 weeks, combinations of medicine, and possibly brain surgery.) BUT...we are praying for Topamax to work now. Right now.
While I appreciate the Social Worker, Dr.'s and the Nurse from the hospital coming in and explaining our new diagnosis so well, (justin called her a walking pamphlet!) I couldn't help but think where the heck were these people 5 months ago when we really needed it?? I guess I have to get used to knowing these Dr.'s are only human. Things fall through the cracks, we will have to explain her history over and over every time someone or something new enters the picture. That is our new normal.
On a positive note, we have everything set up with our MDCP (medically dependant children's program.) On Tuesday we will be spending the night in a nursing home, then Wednesday, Medicaid will become Kendall's insurance secondary to our primary insurance. No more co-pays, etc. This will certainly lighten the financial burden for us and enable us to focus on getting the best care/therapies for Kendall no matter what. (too bad we couldn't have gotten it in place before this last hospital stay!!!!) No, but we feel very blessed.
One day at a time!

Tuesday, February 3, 2009

Laughing in the Face of Those Seizures!

video

Ok, I couldn't resist. Even though the resolution isn't that great, I wanted everyone to witness my beautiful daughter's laugh. I've said before she has the best belly laugh...now you can see for yourself!

On Sunday night, Kendall also cut her first tooth. She's been pretty fussy, now we know why! There are a few others that look like they will arrive any day now too. Lucky us!

Yesterday we went to the Dr. and received another round of immunizations. She did well with them, only a few tears. We were also told to start feeding her three meals a day with the family, and breast milk will be second to that! So, she should start to cut back on her nursing sessions! This makes me happy (since she's starting to get teeth!) but sad that one of our most precious times together is coming to a close.

We had a great day at PT today too. More on that when I have more time! Right now I have to read stories to get my BIG baby to bed. And I do mean big. He's only a head shorter than me now. Where does the time go??

Sunday, February 1, 2009

But I REALLY did want to go to Italy...


"Life shrinks or expands in proportion to one's courage." ~Anais Nin

I'm sure most of you have read the poem "Welcome to Holland." It was first brought to my attention on a website for blind babies, back when all we thought Kendall had was cataracts...and I thought it was the end of the world Kendall could be visually impaired. (hmh!) Well anyway, the poem is a glimpse into raising a child with special needs. How you end up in Holland when you were prepared to go to Italy and enjoy all the things Italy has to offer. You discover that Holland isn't a bad place...just different. You meet different people, yadda yadda. Well, in all honesty, I'm pretty pissed I didn't get to go to Italy. I get it. Holland is a different experience and it can be as enjoyable as you make it. I'm willing to give that a shot, of course, but I would be kidding myself and everyone around me if I acted like I was over the resentment of the detour to Holland. When will that feeling go away? Will it ever go away? Will I ever be able to see a little girl at the soccer fields,church, gym, grocery store, mall, etc. without thinking to myself...geeze, I bet they're enjoying Italy? I've come a long way in the last 5 months, but I have an even longer way to go. Seizures don't help the process either!
Well, today I am going to try again to take my first step towards forgetting about Italy. I am going to unsubscribe to the Baby Center (this week, your 9 month old should be...) e-mails. Hopfully that will enable me to live in the now. We'll see!
Kendall is officially off of the Klonnopin. She has an increased dose of Topamax again tonight. I wish I could say that it is helping, but the seizures seem to be coming more and more today without it. We have a busy week with therapy and our 24 hour EEG on Thursday. Keep us in your prayers.