Tuesday, March 24, 2009

Birthday Celebrations

No, it wasn't Mantha's birthday. It was her youngest sister's birthday. TailorBear turned 10 this past weekend. But appreciating birthdays is a lesson I've learned from Mantha.

Mantha loves birthdays. She gets just as excited for someone else's birthday as she does for her own. She keeps track of time by birthdays. She knows the order of the birthdays. First birthday of the year is Tailor's, then Mother's Day (not a birthday but a marker she uses) followed by BooBear's birthday and Father's Day. Fourth of July helps break up the waiting and at long last Mantha and her twin celebrate her birthday. Poor Daddy. There isn't much time for Mantha to get overly excited about Daddy's birthday as his birthday is just a week after the twins', but she does love to tell him Happy Birthday on his day. Mommy's birthday is last. (Reformation Day, Thanksgiving, Christmas and New Year's help break up the long six months until Tailor's birthday comes round again).

Birthdays have always been special to me but after Mantha was born, they became even more of a reason to celebrate. Each birthday is a chance to celebrate life. It's a chance to thank God and remember how He blessed us with another year. We were told that Mantha only had a 50% chance of surviving the first open heart surgery. We were told that Mantha had about a 50% chance of living to age 5. No one knows what her life expectancy is. Her official prognosis is "unknown". We've learned how precious life is. She's taught us to appreciate the time we have with ALL of our daughters.

I am grateful and thankful that the Lord blessed us with Tailor and that we've had the privilege of having her in our lives for 10 years. We pray that His hand will continue to be on her and that He will bless her with many many more years.

Thursday, March 19, 2009

GOOT recipe and link

I'm sorry I didn't get to this earlier.

Here is what I did:
I brought my Extra Virgin Olive Oil to room temperature. When it was liquid, I poured 3 tablespoons into a small sauce pan to which I added 3 tablespoons Extra Virgin Coconut Oil and 3 tablespoons chopped fresh garlic. When the coconut oil was melted, I poured the mixture into my Vitamix and processed it for a minute or so to infuse the three things together. I poured into a small bowl (like a rubbermaid container) with a lid and put it in the fridge. After several hours it is now more of a hard salve that can be rubbed or spread as needed. I found that it melts very easily as you apply it to little feet. Oh and the recipe says to strain the bits of garlic but I didn't. And it supposedly lasts for two weeks.

Here is the link my friend sent me Walking Therein: GOOT

BooBear and Tailor have tried GOOT and both tell me "I don't like how it feels on my feet and the stuff is stinky but I really like how much better I feel this morning"

I think the key is applying it at the first signs of a cold. Do check out the link if you are interested in the GOOT. There more links on the that page about GOOT. If you try it, let me know how it works for you.

Monday, March 16, 2009

Feeling Better but Tired

Samantha was hit pretty hard with another virus. She had been getting better but then on the afternoon of that recent appointment it was clear she was getting a head cold. This new cold began making it's way through the family starting with Daddy and then Mantha followed by Mommy, and the rest of the girls. Though BooBear and Rosie seem to have had it the easiest!

A friend of mine (Hi Jacqueline!) sent me an email with a link to a recipe for GOOT. I don't know what (if anything) Goot stands for but I can tell you what's in it. Extra Virgin Olive Oil, Extra Virgin Coconut Oil and fresh chopped garlic. I mixed this up and rubbed it on Mantha's little feet, put socks on those feet and in the morning Mantha has been better. She is recovering so much faster with a lot less congestion!

Today she's had a little bit of a runny nose but was able to do Physical Therapy. She did get quite worn out from PT and took a nice little nap this afternoon. She also nearly fell asleep during our family read aloud time tonight but her cough is nearly non-existent.

And we haven't had anymore seizures! Ok so it's only been a few days. Getting sick back to back could have been a seizure trigger so I'm thrilled that we did not have that repeat experience with this go round.

Wednesday, March 11, 2009

Rough Day

Today’s been a rough day. I’m not sure how to express it really. Perhaps it’s just the timing? Mantha’s been sick the last few days. She caught the same virus the rest of us have had. She had me a bit worried on Saturday night when, in addition to being hit head on with the virus, she had one of her seizure episodes. Nobody saw the actual seizure (we rarely do!) but the aftermath is always scary for me. We play the waiting game. Her eyes get dilated, she loses all color in her face and she becomes extremely sleepy. We believe that being overtired, losing a tooth and especially being sick contributed to this seizure episode.

It didn’t take her very long to recover (that’s a good thing) and she already had a routine appointment set up with her neurologist. But this seizure was the second in 4 months. It seems like the seizures are breaking through more often. And these are just the ones we notice, and are not necessarily the ones that we don’t see.

Today was the routine appointment. I had an unsettled feeling in my spirit. I couldn’t stop thinking about us having an accident on the way to the appointment. I prayed frequently this morning and in the van. We did not have an accident but there was trouble on the hwy. The HWY that we need to take was closed at the exit one exit past where we need to exit. It was closed due to an “emergency fire”. That meant traffic was backed up. Horribly backed up. It took 20 minutes to get from the Interstate to the HWY exit. It should take 3-5 minutes! By God’s grace we were only 10 minutes or so late for the appointment. I would have called ahead but (remember I said it was a rough day) my cell phone was *dead*. The doctor’s office was understanding and we were still able to see the doctor.

The girls were in the room with us. I know they heard the conversation but I don’t think they really heard it. I’m glad. Though I did hear it, it took me several hours to process it.

Mantha has maxed out the current medication. Her blood level indicates that it is the right range for her weight. Because we suspect that overtiredness due to excitement is a trigger factor and because it was only two seizures 3 months apart she was hesitant to change medications. We may have to consider adding another medication .

But the hard part. The rough part. Just a few simple words towards the end of the appointment. The doctor was filling out the paper that we take to the receptionist for setting up whatever we need and/or the next appointment. She said, “We can’t talk about being seizure free.” Seizure free. 1 ½ years ago we came really close to being able to talk about seizure free. We had gone 8 or 9 months with no seizures. The doctor said that if she could go one year without seizures, we would start weaning her off the meds. Now, we’re averaging one to two seizures in a four month period.

I know things could be worse.This is really such a small thing in the big scheme of things.And if I am truly honest, today wasn’t nearly as rough as it could have been. I kept feeling the tug to pray. I believe the “unsettling feeling” came from the Lord so that I would lean on Him.I remember setting down the dead cell phone and praying that I would not need it and realized that I would have to be dependent on the Lord and the thought even crossed my mind that I was stepping out in faith and why should it be so hard. People did this all the time before cell phones were invented!

I didn’t realize what an emotional day this had been for me until after dinner.The girls were listening to a CD of hymns while they cleaned up the kitchen.I heard snatches of “How Firm a Foundation” and I just started to cry.It was in that moment, hearing the words to that hymn that I realized I was leaning on my Foundation today and He “upheld me in His Hand” and he “did not forsake me”.He gave me the grace that I needed to deal with bad traffic, grumpy drivers, backed up traffic and facing again the reality that my daughter is different.But it’s all good.He’s good.He’s my rock and my strength and fortress.He’s my firm foundation and He has designed even this dross of her seizure disorder to refine us.Once again we are living in the truth of Romans 8:28.We have clung to that verse through open heart surgeries and we continue to cling to that verse in the “little things."

Here is a link to the hymn if you are unfamiliar with it:
How Firm a Foundation

Saturday, March 7, 2009

Cute quote to daddy

This was one of those cute things that a child says that just cracks you up: as we were finishing breakfast this morning, Mantha told me 'I want baby brother'. I told her I was 'trying' (of course she doesn't understand the entire concept of pregnancy and childbirth) . Her response? 'Hurry up, daddy.' It was cute and humorous at the same time. I guess you had to be there.

Whose daughter is this?

Let me give you a couple of examples, as we were discussing this over our wonderful breakfast of ice cream (see my wife's post on this). At the time, living through both of these were I guess you could call ' inconvenient' but as I've looked back, it's become something much more wonderful. The first example is: whenever I would work on our yard in New Jersey (mowing primarily), I would have to wear her in a sling. It's unfortunate we never got a picture of me in shorts, t-shirt, and sling. I remember so many occasions when she would be asleep while I was working, and it would be sweaty and uncomfortable, but at the same time, I knew I wouldn't be able to put her down so I just kept going. It was one way to make sure she got some sleep. The second example is a little more amusing. While I was gone at work during the day, she would be happy with mommy and sisters. As I was in the military at the time, I wore a uniform complete with boots. The house we lived in at the time had a nice big porch. Every day, when I walked on the porch, she would hear my boots and immediately start crying and carrying on until I would hold her. We had an friend who was witness to this, as she was holding her when I came walking in and said 'you were just fine a minute ago' when the crying ensued. Wonderful memories as we've looked back. We laugh now, but we certainly weren't at the time. One of the more difficult instances was, during her last open heart procedure, she wouldn't settle down to sleep at night in the hospital unless daddy was there. It can be difficult to have to sit watching your daughter suffering, and at the same time waiting for her to drift off to sleep, and sometimes get halfway out the door and have to come back because she wasn't as asleep as I thought, but it gave me time to be with her and focus on what was truly important in life.

Ice Cream for Breakfast!!!

Today. March 7th, we ate ice cream for breakfast because Give Kids the World Village sent out an email encouraging families who have stayed at GKTWV to join in celebrating Founders Day. According to the email, the tradition of eating ice cream for breakfast started 4 years ago.

We chose to go all out and had three different flavors (chocolate, vanilla and peanut butter overload!), whipped cream, cherries, mini-chocolate chips, chocolate sauce and butterscotch. Each person choose their ice cream and toppings.

Mantha went for a basic chocolate sundae: giant scoop of vanilla ice cream topped with chocolate sauce, whipped cream and a cherry. Here are some pictures of her and her sundae.

Ok, Hand, what do you think we should do?

This looks good.

I'll just taste it now.

Would you like my cherry, Daddy?