SHE SAID " MOM " !!

So this morning was another early start for us, as I needed to leave for work the second Jen left on the bus. We were up early and in the kitchen, I was of course talking to Jen as I was picking up. I said, "So Jen who do you think is going to get the award? " ( I was telling her why I needed to get to work early) She says "MOM" !!!! I almost dropped the dish I was holding. I said, say that again!!! She said "MOM" !! O.k. she got the biggest hug, and the tears were flowing.. she was so so aware this morning, I knew she was listening, smiling and giggling. I actually had "Jen" with me for a few minutes.. That was the best few minutes I have had in along time!! I LOVE HER VOICE WHEN SHE ACTUALLY SPEAKS!! If only it were more often, but today was going to be a good day no matter what, she spoke to me, she actually answered me! And she was right, I got the award.

While I was at work, I found out her bus was going to pick her up early from school due to the snow. I left work early. She got off the bus so happy and seemed so aware again. We were up in her room watching a movie and she all of a sudden rolled on her side and looked me right in the eyes. I said hi beautiful, she gave me a huge smile, giggled and rolled back over. She rarely lets our eyes meet, she always looks away.
Again, she was so aware and intentionally looked at me.

She is happy and smiling today, and do I dare say, so few seizures this week. I know this is the difference. When they are minimal, she is a different person, aware and more in our world. May this stage last, it feels so good for her to be in our world for a change.

A long day for Jen

The day started early today for both Jen and I, we left the house a little after 6am and didn't get to the hospital until 8:50. She was so good in the car. We met with the nutritionist and she went over Jen's diet, seems I was right, she takes in ALOT of calories, very few fluids and is very low on intake for calcium and Vitamin D. No surprise there. After numerous calls to verify supplements with her other specialists we now have clearance for a calcium enriched diet. We will see how she does, hasn't had any milk based things to drink, since she was 5, so it may take a bit.
So we have drinks, vitamins and a supplement added to the mix and we have about 5 weeks to work hard and get her gaining weight. Hope it works. If she can start gaining weight, maybe we can get with the original plan of the VNS for her seizures. Seems we take one step forward with one doctor, and two steps back with the next.
We also had labs and x-rays done today. Jen was so quiet all day, the nutritionist did not get the opportunity to meet the "real Jen" she didn't make a peep, not once, we actually had a conversation for over an hour. She made up for it at the lab though - she yelled, she cried, she was so so MAD!! I didn't blame her, she had enough!!
So after a day like that, we came home, cuddled up and watched her movie. She is happy to be home, with no one poking at her. I told her it is now the weekend, she can do what she wants for the next two days, I got such a smile from her!! On a good note, no appointments next week - none planned anyway!

A new day, a new chapter

Last night I received a call from Jen's GI doctor to discuss her latest lab work. Good news was her thyroid is fine and she does not have Celiac. Great news!!! Then he tells me she has Vitamin D deficiency, and it is very low. Low enough to need mega supplements for the next 6 weeks. Also along with that she will need to take Calcium supplements. Well in order to do that we have to contact her nephrologist as we were suppose to limit extra calcium due to her kidney stone she has had for 8 years!!! So when I think I am doing right by my daughter with one doctor, another thing pops up in another area. So this morning was spent leaving messages for her specialists in nephrology and neurology as we need clearance from both before the new meds are started. They both called today and will hear back tomorrow again from one. In the morning Jen and I will travel to Boston for her awaited nutrition appointment, more lab work due to the deficiency they now will test even more, and an x-ray for her bones. One doctor said today she needs to have a bone density scan now which I am sure will be scheduled soon too. So tomorrow we will start the vitamin D, learn more about nutrition to get her to gain some weight, and try to keep it on her, learn how bad her bones may be..... not looking forward to tomorrow, as it only means more medications, more regimens and more future appointments. Poor Jen, she can't catch a break these days, we have been so happy her seizures are settled lately, and all this gets added. Her attendance from school has been horrible, as mine at work has, she has so many appointments, and our calendar for Jan and Feb is loaded already! Well off to get Jen settled in bed so we can get up at 5:30 and be on the road by 6am. Fun Friday, huh?

HAPPY NEW YEAR!

Here is to a Happy New Year ! My wish for this year is that we all are healthy and safe!
Kristina is in Guatemala now, Ned left this morning in an ice storm to commute to work, and Katelyn, our new driver left a few hours later in the car to school.
Jen's body is challenging her everyday between seizures, medications, nutrition issues and her stiff body that doesn't move the way it should.
May this year bring our family less stress, health and happiness in all we try to accomplish!

December - the month went by so fast!!

I can't believe it has been a month since I have signed in. I keep thinking I need to update, but never seem to get to it. So in a nutshell here is the past month. Jen has been doing great with her seizures, do I dare even say it? Only a couple a day if that, and short in duration since the middle of December. The doctor still wants us to inquire about the Vagal Nerve Stimulator, and we do too, but we have to jump through a few hurdles with nutrition and GI before anyone will consider it. Jen's weight is still unsteady, we go to nutrition this week for a high calorie diet - I certainly know I can't feed her more in quantity, so we will see what they have in store for us. We will make all attempts before we have to go back with a feeding tube, which unfortunately we have had discussions about with the various doctors. In a couple weeks we see endocrinology which is another new department for Jen. Since the middle of December, Jen's white count has been low, due to medications, but also means we have to keep her away from crowds, anyone the least bit sick, etc.... how do you do that when we have to go to labs, hospitals and doctors offices? So far, so good thank goodness she is healthy!! So many specialists and so much time needed to make all the appointments and then actually get to them!! It is a constant challenge, I had to cancel one today which was 1 1/2 hours away and we had an ice storm with 2 hour delays for the schools. The appt couldn't be delayed time wise, so waiting for another date now. My calendars are a challenge, and with each appointment I make, means asking for yet another day off of work. Well off to enjoy my day with Jen, it is stormy and raw outside, maybe we can watch a movie...lol... oh Jen and her movies, at least she got alot of new ones for Christmas !!

Do I dare say......

Do I dare say it has been 5 DAYS since Jen has had a seizure! This is great news, maybe it was from the medication increase last week, whatever reason, we will take it! Of course it seems the longer she goes without a seizure, the more severe ones are usually lurking around the bend.

She has had a good week. Yesterday she went to the dentist, long overdue. She still has MANY baby teeth on the top, which now are in a row of their own next to the adult teeth. The dentist would like to pull them, but said since she is on so many meds, he needs clearance from her doctors to give her novacaine. Who knew? I guess it does go into your system and can effect your liver. Good thing its not urgent, he said to plan for Jan or Feb.

I try to get along with all the teachers, therapists, nurses, doctors, bus drivers, etc....alot of people that other families don't deal with on a daily basis. UGHHHHH, one school nurse really hit me the wrong way yesterday!!! I am not one to cry on a drop of a dime, but she brought me to tears....I don't know if I am more angry at her, or if I'm mad at myself to let her get to me!!!!


The most exciting news this week is that Katelyn got her license. She is doing great driving, already obtained a parking permit for school and is very independent this week. Kind of wierd not having to rush home to get her from school to work, etc... I will miss it though! Another milestone in the family!