New Adventures

I've been away from the blogging for a while now. Cool spring weather finally arrived and since it hasn't been too hot for me, I've been able to get out a little bit.  Since my specialist recommended walking for strengthening my legs, I've been out and about some exploring one of my passions... photography.  I've recently purchased a new camera (daughter broke my last) and this time I upgraded to a DSLR.  I've wanted one for almost a decade, and just thought it was time I did something for me.  I discussed it with a friend and we found a match for me. A Canon Rebel XS.  So far I've been snapping away at everything I find interesting. Learning the weight and feel of the camera in my hands. Learning how to find what I need without much effort. Learning about DSLR photography and realizing that I've been missing out on a lot of opportunities by buying cheaper point and shoots.  To get feedback and advice on my photography skills, I joined a site called Fan Art Review (FAR).   And I am absolutely loving it! There are many great photographers and artists of all forms that offer advice and criques. It's a great way to find your flaws but also your areas of excellence. So far I've had 3 pieces recognized and one of those got All Time Best (less than 5% of the pieces on the site get this).  It's a great boost to my self esteem, as I tend to think that my work and talents are sub-par to say the least.  So if you are interested in checking out my work, perhaps even ordering an emailed copy to print and frame as you wish, then check out my site or my gallery.  If you happen to drop in and like what you see, feel free to send me a message on here as a comment or email me your thoughts on my work. I'll be expanding the works day to day as there is an upload limit of 2 per day per artist, so it'll be a slow progress but this will also encourage me to be thoughtful and critique my own work more carefully and thoroughly before posting it.  Anyway, my health is still up and down but I think we are closer to the right path on meds for the more serious aspects of it.  For now anyway I am able to be on my feet a little more, only black out occassionally (once a week maybe), and if it isn't higher than 72-74 degrees or so I can tolerate being outside a little.  Not sure what I'll do once it gets hotter as it is bound to do very soon.  I guess I'll cross that bridge when I get there. :)  Thanks for dropping in today and I hope you have a very blessed day!

Granny Sized Pill Box!

Well I put a call into my Dys. Dr. today to inform them I'd emailed them some problems I was having. Breathing problems are better but still not too good.  Sleep is getting a little harder to come by again, at least the falling asleep part.  And the heat is beginning to get to me and it's not even really hot yet, so I just know that once the humidity kicks in it's going to be very hard on me.
So they called me back and we're adding a little more to my meds.  I hadn't realized since I didn't fill the metoprolol last month due to having some at home, that she had changed it. So having gotten the new scrip filled yesterday, instead of 2 50mg (1 am 1 lunch) I'm on 2 25mg Extended Release Metoprolol now. Same times of the day. So I'll see if there is any difference between that and the regular Metoprolol.  And due to my breathing she's having me add 1/4 of a .5mg Klonopin at breakfast and lunch and then up to a half of .5mg at those times and also another 50mg of Zoloft in the mornings. My "granny sized" pill box is starting to earn it's keep...lol  And my bank account is slowly depleting...lol  Just this month alone we've spent over $800.00 on Dr. Visits, Blood Work, and Meds.  Yesterday I didn't have the extra pills added or even the Klonopin filled, and it was 100 bucks! I am dreading to see the totals next time around due to filling everything including the extra doses.  Still continue to pray that Eric gets this job.  It has great benefits/insurance and the pay is much better. Right now all of the costs are out of pocket due to no insurance, but God is able to place Eric in the right place at the right time!  So please help us pray about this matter!  Catch ya guys later! God Bless!!!

A Childlike Faith and Prayer

Tonight marks 2 weeks ago that my baby daughter got into my medications.  Tonight marks 2 weeks ago that God heard the prayers of an older sister that God spare her little sisters life. Tonight marks 2 weeks ago that I looked at my little girl and I knew if God didn’t intervene I could lose her.  Tonight marks 2 weeks ago that everyone around Aleah witnessed a miracle.

For those of you who aren’t on my facebook and in my family and church family, then I’ll fill you in.  As most know, with Dysautonomia you have to usually take quite a few medications, usually really strong, to manage the symptoms.  Two weeks ago I was on my first week of a new medication schedule and dosage.  Thankfully since it was the first week, there were fewer pills and smaller dosages than I would have the next week.  Yet even though this was the case, February 22, 2010 could have turned out very differently.

I’d just bought a new pill box.  It was a 7 day, 4 times a day, brightly colored one.  I had been in my daughters room cleaning, got my meds out to take the night dosage, stepped back into their room distracted for a brief moment.  Suddenly my oldest daughter ran to me, screaming “Mommy, Leah’s in your medicine!” I ran to her, and when she saw me she dropped the pill she was about to put into her mouth.  I quickly checked the pill box and almost every single section was open and a LOT of the medications were missing.  I quickly asked her if she ate the pills, and she said no. I assured her she wasn’t in trouble, but I needed to know and she said that she did eat them.  I asked her how many, and she stated she didn’t know.  Glancing around and looking for the pills to be sure, I could only find the one that she dropped as she saw me.  So as my stress levels rose, the Dys began to kick in and all I could think to do was call my mother in law, tell her to rush over that Aleah had gotten into my meds, and immediately started getting clothes on all of us as all this had happened at 10:30 pm. 

As we were hurriedly throwing on clothes my oldest daughter came to me and asked if her sister was going to be ok. I told her the meds were very dangerous and that her sister had eaten a lot of them.  I told Serena to get herself dressed and help me get Aleah’s things and get in the yard to meet their Granna.  I later remembered hearing my little girl praying for her sister. She prayed: “Oh Lord, please help my sissy be ok, and Oh Lord let these medicines just pass right through her.  Oh Lord don’t let them hurt her or make her sick, and Oh Lord don’t let the medicines work.”  I was so scared that I was shaking, crying and having chest pains as my heart rate started going up.  All I could pray was, “Lord, please don’t take my baby.” over and over.  When my youngest, the one who took the meds, saw how upset I was, she walked over and wrapped her little arms around my right thigh and prayed, “Oh Lord, please help mommy feel better, in Jesus name, Amen.’ and then she said “There mommy, you’ll feel better now!”  All I can say is I have the 2 greatest children in the world who know where to turn in their time of need.  These two little girls love God with all their heart and each day their child-like faith never ceases to amaze me!

We got Aleah to the ER and got charcoal in her, and we were rushed to Children’s Hospital in Birmingham. By this time the meds had begun to affect her and she was pretty much impossible to wake.  I remember seeing her little body being lifted off the stretcher and into the ambulance car seat. As they strapped her in she didn’t even budge, open her eyes or anything. She simply slumped over.  I knew then that the meds had began to take effect because her normal reaction would have been to open her eyes, check her location, and then go back to sleep if she recognized everything.  My little girl didn’t budge as the moved her from the car seat back onto the stretcher, and it took a lot of effort to even rouse her once they got her from that stretcher onto the ER bed at Children’s.  Unfortunately Children’s was packed to capacity and all children who had to stay on constant monitoring had to stay in ER until a bed opened.  Aleah slept about 16 hours minus the 2 brief times that I was able to wake her and get Gatorade into her.  I was alone (Eric had not arrived yet, neither had my pastor who I am so thankful for!) when the ER staff came into examine her. I was told that if she quit breathing they’d tube her, if her heart were to become affected they’d deal with that, and all sorts of problems that could possibly arise.  Thankfully just after that my pastor arrived which was a comfort just having someone else there.  Finally Eric got there, Bro. Wallace stayed a bit, prayed with us, and then went on home.  When Eric held Aleah’s little hand and cried, I just felt so guilty.  All I could do was blame myself over and over and apologize over and over.  The Dr’s would assure me that they see tons of kids who had gotten into their parent’s medications and that we weren’t the only ones, but I still just felt horrible that it was my getting distracted that had put Aleah in this situation.

She stayed stable throughout the night and Eric and I spent the night sitting in chairs beside her bed.  There wasn’t any way that I could sleep sitting in those chairs so I just tried to prop my feet up on the end of Aleah’s bed, but I’d end up standing and pacing and checking her and her monitors.  Finally sometime the next day I noticed Eric barely propped up on the head of Aleah’s bed asleep, and I was finally able to convince Eric to go home and get some rest and to check on our oldest, Serena and to keep her updated.  While he was gone I attempted to get some rest, but found it difficult. It should have been easier to rest since Aleah had woken for about 45 minutes and managed to eat some dry cereal and a little milk, but seeing her sleeping again so deeply worried me. I finally had crawled up on the bed with her and curled up. I remember looking at my watch and the time between then and a nurse coming in to say we were going to the Special Care Unit (SCU) was 10 minutes. These were the only minutes I had to sleep other than a 5 minute nap before Carolyn and Vicky visited at lunch. We got Aleah to SCU and she woke up and Praise God she stayed awake for several hours!  She was beginning to act more and more like my sweet baby again!

In SCU we were only allowed certain visiting hours. there was 7 1/2 hours split into 2 1/2 hour time frames that no one was allowed back to just sit. I checked in on Aleah during those times though just to be sure she was fine. And if she was crying they would allow me to sit and hold her even during the non-visiting times.  That day my parents and my sister drove up to be with us and Aleah as well as my in law’s coming to the hospital.  So Aleah was never without a loved one during visiting hours! That night however her blood pressure dropped too low and extra iv fluids to get it higher.  At that time her pressures were 30 on her diastolic levels.  The extra fluids brought it back up and now we were waiting on her to have wet diapers. Later on I think that afternoon, she got really whiny and just could not stay settled. I was holding her trying to soothe her and suddenly a gush of warmth hit my hand and I felt her little diaper filling! God had answered another prayer! Her little kidneys were at least functioning! Still unable to get her to drink on her own much, she remained on the monitors and IV’s until Wednesday around lunch I think, and would have still had her IV port in had she not been playing so much that she BROKE the IV and they just had to remove it!  She was definitely getting back to herself!  Our last hurdle was to see if her pressures stayed up off of the IV and to make sure her diapers didn’t start weighing less signaling that she needed the IV for fluids.  At 4:30 Wednesday afternoon, 36 hours after Aleah had eaten 10 gummy multivitamins, 4 50mg Metoprolol,  3 25 mg Zoloft, 3 50mg Trazodone, and 3 .25mg Klonopin, we were able to take our little girl home with orders to watch for anything out of the ordinary and keep an eye on wet and dirty diapers.  Late that evening I was finally able to take a bath and try and relieve the pressure from all the pooling in my legs. My legs were swollen and tight from the hip down. Couldn’t see my kneecaps, I had 3 times the normal size ankles and feet.  After getting my bath I put both of the girls in the tub and Serena suddenly starts screeching and I knew that Aleah’s bowels were just fine too!  Thankfully Granna was there to deal with that, because I was so nauseous! 

So here we are two weeks later and I spent this afternoon with my two beautiful girls out playing with their bike and tricycle.  Watching Aleah keeping up with her sister, sometimes even getting the best of her, was something that I’ll never again take for granted.  I am thankful every day for my two girls. Because two weeks ago I almost lost my baby daughter.  Two weeks ago my oldest daughter stepped up to the big sister plate and basically saved her sisters life.  Two weeks ago there were two little lives that reminded me of the power of prayer.  Two weeks ago, God spared my child and proved yet again to my family that He is a healer!  Thank you Lord for keeping my family in your hands yet again!