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? )

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!

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!

Laughing in the Face of Those Seizures!

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??

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.