Beauty is...

...little rainbows dancing around on your ceiling from a chandelier that you once admired at your grandfathers house.

...two little boys helping their daddy with cheerful hearts.

...your sweet baby boy enjoying the outdoors while the sun lends him a golden halo.

...this baby boy, who we thought may never walk, exploring with an independent spirit.

...in the eyes of the beholder.

...all around us, if we only look.

Thank you, Lord, for surrounding us with beauty. Help us remember to always look for the beauty in life. Thank you for these moments in the past few days. Amen.

More Tests

My day went nothing like I expected. It started with a call this morning from Joel's therapy office saying that his therapist is sick, so his therapy was canceled. You see, God knew how my day was going to go before I knew. At the time I thought nothing of his therapy being canceled. I just thought "great, that makes my day easier". So, right after the call I woke up Joel and took him fasting to get his blood work. The blood draw went as good as can be expected. He's such a good little boy. Only cried a little. :( My sweetheart. They took the maximum amount of blood allowed for his weight and may still need us to come back in a couple days to give more. I guess there were a lot of tests ordered. There was a huge wait when we went to the lab so I ended up missing my appointment for my Echo (heart ultrasound). I went as soon as we were done and explained what had happened and she rescheduled me for 12:30. That was exactly the time I would have been leaving to take Joel to therapy. So see, God knew and he had already arranged for me to be available. My Echo went well. She said she didn't see any tumors (which TSC can cause if I carry it). Also, my heartbeat was fast again. The tech didn't say any more than that. Just that the doctor will give me the results in about a week. I got a call this afternoon from Joel's pediatrician saying that they had the results from the urine culture and it was negative. I guess that just means that he doesn't have an infection. So that's good but to me that just points to his kidneys as the problem even more. I am awaiting the results of his blood work anxiously. Isaac got home today and took us out to dinner to "give me a break". :) Isn't that sweet? It's so wonderful to have him back home with us where he belongs. The kids lit up when they saw him. They love him so much and need their daddy to be around. It looks like he may be going back to work in El Centro again next week which means he will be staying away from home again. It is about a three hour drive one way from our home. The company he works for has picked up a long term job there and he is waiting to get a call saying if he was chosen to go or not. Don't know what I will do if he has to go long term. :( At least I get to see him on the weekends. I know there are many military families who are separated for months on end and I really respect them for the price they have paid to serve and protect our country. Thank you to all our military. I am going to bed now and I don't have to sleep alone tonight! :) Thank you, Lord. Goodnight.

Wordless Wednesday: Easter Pictures

Crazy

And just when I thought life couldn't get any crazier...meet today and tomorrow. Today I woke up calling the doctor. This thing with Joel has just gone on too long and I told them I am not comfortable waiting any longer. What prompted this? Blood in his diaper again last night. He has been having blood in most of his diapers. What happened over the last week, you ask. Last Thursday I called the doctor about his urine and the blood in the diapers. He said that he wanted to test the urine that day, so we did that. It showed moderate blood and I think some white blood cells, so they sent it out to be cultured. They told me to come back next Thursday to test it again and if it showed blood then they would order blood work. Well, we are still waiting on the results of the culture. Today the nurse practitioner said the lab had the results but they were still working on getting the lab to fax the results to them. (I hate waiting games! Especially when it comes to my baby!) So, back to this morning. The doctor said they needed to see Joel. So after doing school with Jonny, Floor Time Therapy with one of Joel's Hope therapists, and feeding the kids lunch, we were off the doctor. Me and the whole gang. It's kinda interesting to watch peoples reaction when I walk into a room herding three little boys, some people raise their eyebrows and look away and others watch us and chuckle under their breath. One lady even commented to her son and we walked by that this is how it looked when him and his brother and sister where little. The nurse practitioner was great. She ordered a renal ultrasound. (This isn't as bad as it sounds...it just means an ultrasound of his kidneys. TSC can cause benign tumors to grow on any of his vital organs so it is important to check for this among other things.) She also order a bunch of blood work including blood sugar level, so it has to be a fasting blood draw. Because of this we are going in tomorrow morning to get it drawn. As soon as we got home from the doctor I made brownies for my dad's birthday celebration which was tonight, got everyone ready for the party and went. Everybody had a great time and we didn't get home until 10:15pm. Way past their bed times. Shhh, don't tell Daddy. He's working in El Centro again. So, once again I am single moming it this week. The great thing this week is he should be home tomorrow night as they are finishing that job. Yeahhhhh! :) :) :) :) Bedtime went surprisingly well for it being so late and being a bath night and me having to do it all by myself. Joel gets his anti-seizure meds at night so it makes the whole bed-time routine a little harder. After they were all in bed I cleaned the entire kitchen. :) Even though I am exhausted, the kitchen is sparkling clean. :) Tomorrow morning I start the craziness all over again. What do I have on my plate? Joel's blood work at 8:30. My heart ultrasound at 9:30. The kids breakfast and Jonny and Jason's school. Lunch. Joel's occupational therapy (40 minute drive one-way) at 1:00. Jonny's piano lesson at 2:00. (Which reminds me that he needs to practice in the morning, too.) Hopefully after all this I will get a nap (which I will desperately need) before I cook a special dinner for Isaac since he is coming home after me not seeing him since Sunday (which feels like an eternity ago). It may not sound like much to you, but add in three little boys putting kinks into my plans by getting hurt, a little fighting, insisting they get THEIR own way...you get the point. Anyways, I know I will hit the ground running in the morning and not stop until I hit my pillow at night (or hopefully that nap I am going to try for :}). If you are still with me reading at this point, I applaud you for sticking with it. :) I know this has been a long post. I thank you from the bottom of my heart for caring about us enough to keep checking back here and for those of you praying for us...God BLESS you! We definitely need all the prayer we can get! I will do my best to post an update on anything I might find out tomorrow about Joel or my heart. It will probably be evening before I get to sit down at the computer. Good night my friends, I better get some sleep before tomorrow comes! Annie

Concerned

I am concerned about Joel today. The anti-seizure medication he's been on since he was nine weeks old is hard on his kidneys and they used to do blood work about every three months to check his kidneys. I'm not clear if this was because he was on more than one medication, but the fact remains that he hasn't had his blood checked in about 13 months. I'm not sure if this is because of an oversight or because the docs didn't feel it was necessary with him just being on the one medication. Here is what I am concerned with - his urine is not normal. For about the past three months almost every diaper change in the morning has been weird. By weird I mean dark colored and kinda like syrupy. It's really hard to describe but it's kinda heavy and gel-like. Anyways, it makes his diapers feel really weird. (And I would know because I have changed three kids worth of diapers and always used the same brand.) I haven't worried about it too much because I thought it was probably because the urine sat in the diaper a long time...since it was a diaper he had worn all night. In the past week it has started happening during the day. Well, I woke up yesterday with his kidneys on my mind. When I realized it had been so long since his blood had been drawn I thought "I wonder". Last night when I took his diaper off for his bath I noticed some blood in the diaper. So today he is going in to his pediatrician to get his urine tested and I am trying to get his neurologist to write an order for blood work. Update on my heart: I got a call this morning and they moved my Echo (heart ultrasound) up to next Wednesday. (A whole week and a half earlier :)! ) My stress test is on Monday.

Quick Prayer Updates

It seems like my posts have been getting longer and longer (sorry about that), so here's a quickie. I couldn't figure out the order to list them in so I think I'm going to go from youngest to oldest. Joel has had Pink Eye for a few days now...we've been doing medicated eye drops and he is looking much better, even though he hates the drops and fights with all his strength. All three boys have been fighting my cold in their own ways off and on for about a week now. Thankfully, none of them are too bad and the worst we've dealt with is stuffy noses and the pink eye. Praise: None of the boys have caught my cold as bad as I thought they would. Prayer: That their bodies will continue to fight it. Isaac is working away from home again this week. I am getting a little bit better every day. My heart was bothering me yesterday, but is doing good so far today. I do get really lonely when Isaac is not coming home in the evenings...makes for a really long day. It's harder this time, too, because I'm sick. Praise: Isaac's working! I'm feeling a little better each day. Prayer: That Isaac will come home safely to us and that I will heal from my cold. That I will be strong while he's gone and that being both Mommy and Daddy to the boys is something that I will be able to do with patience, grace, and energy. Also, that my heart issues won't be serious. My dad's knee is gradually getting a tiny bit better. He had a MRI on it yesterday. Don't have the results yet. He now has bronchitis. My mom is back on antibiotics so her pneumonia is getting better each day. Praise: They are both getting a little bit better and they are both under the care of good doctors. Prayer: That both of them heal quickly. That God will provide babysitting as I need it...they were my only babysitters during Joel's therapy. My grandma is staying at my aunts house while her hip continues to heal. My grandpa is out of the hospital and even though he's in a lot of pain he is getting better. He still has the pneumonia. Praise: They are both getting a little bit better each day. Prayer: That both of them heal quickly. My grandpa doesn't know Jesus. He knows about Him but has chosen to live a life without him. I pray that he will allow Jesus to enter his heart before the end (which is probably not too far off). My grandma is a new believer and she would like to be baptized. I pray that she will be well enough to get baptized soon and I also pray that she will continue to grow in her newfound faith. Thank you for your love, prayers and support. It means so much to me and my family that you would take time out of your busy lives to check this blog and pray for us.

Busy, busy, busy (& my heart)

It's always amazing to me that even when I get to stay at home most of the week (all of Joel's therapy's have been canceled...therapists don't want to get sick, imagine that :] ) I feel like a crazy chicken running around with my head cut off...or should I say I wish my head was cut off. I have had a head cold all last week that has now found it's way into my chest. For the first time today the house is quite for a moment. Joel is taking a nap, the boys are outside playing, there is a load of laundry washing...oh wait, not so quite, the kitchen timer is beeping at me.

OK, now that I've got the kitchen timer turned off...and in the process noticed that the boys (a 4-year-old in particular) were playing in the mud which I had already explicitly told them not to do...where was I? Oh yeah, life being busy. So, last week started by us coming home from Big Bear on Sunday (feels like a world away) and then Monday I had to pick up Isaac's car from a park 'n ride near the beach. That's right, the wonderful thing about southern California is that we were in the snow one day and on a 72* beach the next day. And, as you might have guessed by me picking up Isaac's car, he worked away from home all last week. So, after I picked up the car I took the boys by the beach. I tried with all my might to avoid it because I have been having problems with my heart and I was tired and had a lot of unpacking to do at home, but it's like the beach has a magnetic pull and I just couldn't be so close without stopping by. (We only live 30 minutes from this beach...but don't go as often as I would like.) It was great fun for the short time we were there (I didn't have much change for the meter). The boys played on a playground that is in the sand and then they moved to playing with the sand and then we progressed toward the water and they got to put their toes in. They loved it, running and squealing the whole time. It was hard to drag Joel away from the water when it was time to go. As we left the boys got to run and scare about 500 seagulls who were sitting on the beach. Wish I had my camera with me. :( Tuesday came around with me catching my mom's cold. I was sick the rest of the week and with Isaac gone, things were hard. It's difficult when you're not feeling good and there is no one to give you a break. How do single moms do it? I am in awe of single moms.

The doctor called me on Monday with results from the heart halter I had worn the previous week. It did catch one of episodes I have been feeling and after looking at all 24 hours of results the doc thought I should go on medication to slow down my heart. Now, for those of you who know me I like midwives, homeopathic remedies, herbs and vitamins...not pharmaceuticals so much. I know they have their place and can save lives, but it is not always my first choice. So, promising to avoid caffeine and get more rest bought me a week without medication. I decided to get a second opinion from a cardiologist. Part of this decision is that I want to know why my heart is beating too fast and having palpitations. I need to have further testing done...not just "your hearts beating too fast so here's your medication". Something that has to be considered is that my grandma had problems with her heart valves, and also that I haven't been ruled out yet from having TSC (since it is hereditary about a third of the time). TSC can cause benign tumors to grow in any of your vital organs including the heart. So I don't feel comfortable unless we do more testing.

I saw the cardiologist on Friday and he ordered more testing, an ultrasound and a stress test (you know, the dreaded treadmill). These are scheduled in the coming month. I will keep you posted about what's going on. Before we go any further, I should probably fill you in on what's been happening with my heart. About three weeks ago I was on a day outing with my family and we were taking a walk when all of a sudden my heart started misplacing beats (that's how I describe palpitations) after a few seconds of palpitations it turned into racing and pounding. So fast and so hard that it took my breath away. It was hard to breath and I felt lightheaded (like I was going to faint) and dizzy and I felt overheated so I had to take off my jackets (in the snow, I might add). This lasted several minutes (way too long) and part way through it felt like my chest was tightening. As my heart slowed somewhat I got a really sharp pain in my right shoulder. This lasted about 5-10 minutes with my heart still beating too rapidly and still feeling like I couldn't get enough oxygen. Scary stuff. Up until this happened I had only had palpitations occasionally (like maybe once every couple of months) during the last about four years. My mom has palpitations so I kind of expected to have palpitations also, but not an episode like this. Since that episode I have been having palpitations almost daily, multiple times a day. Whenever I get them I feel light headed and dizzy and I feel like I can't breath. I have also in general just been feeling exhausted and have a lack of energy. I have been waking up at night with my heart racing. Some other things, may or may not be connected, I have had a low fever (off and on) for over a year now (docs don't know why), my memory has been REALLY BAD lately (and I mean so bad it's scary...not just memory but thinking in general is bad), my eyesight is getting worse weekly and now I am often having trouble focusing my eyes. On top of all that I am losing my hair. Hopefully we can figure out what's going on soon because I sound like I am falling apart.

Thankfully Friday night Isaac came home. It was kinda hard to be thinking scary things about my heart all week without really being able to share it with him. Saturday I felt awful...it was one of my worst days...fever, heart acting up, really super weak (I almost couldn't stand or walk), exhausted, eyes not focusing...and then, God gave me a blessing through my children. "Mommy, mommy come outside fast!" And there before my eyes was the most beautiful rainbow. I was blessed to be able to get a picture of it before it slowly vanished.God's rainbow is a promise to us...Genesis 9:16 "Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." The covenant this refers to is God promising never to destroy the earth again with a flood. But on Saturday, that rainbow meant more than that. It was a promise to me from God that he was with me and that no matter what is happening there is beauty surrounding me if I only look up to the sky.

All About Big Bear...And Prayer Requests

We had a blast in Big Bear. It was so nice to get some relaxation in and the kids LOVED playing in the snow. Unfortunately, there wasn't too much snow (funny thing...one week after we were there (tomorrow) it's going to be snowing). Oh well. I know it might sound weird to those of you who live in snow states that we drove 2.5 hours (one way) to go to the snow...but for those of us (me and my kids) who have grown up in southern California snow is a huge treat! Most of the ground had no snow, but there were patches and on Saturday we drove around the lake until we found a hilly area with about 2 feet of snow. The kids loved sledding and much to my shock Joel LOVED the sledding. He also loved having snowballs thrown (gently, of course) at him. He would giggle and giggle. SO CUTE! Also, look at how CUTE my munchkin is in that snowsuit! There's just something about a baby body in a snowsuit.Joel did not like walking in the snow. It was difficult snow because it was warm during the day and cold at night so the top of the snow had an icy crust. I already told you it was about 2 feet deep in places, so about every third step the crust would break and you would sink down to your knee. The dangerous and difficult thing about it was that you don't know which step is going to sink. After we had been there sledding for about half an hour my dad, who was carrying Joel (and shouldn't have been because of the precarious walking condition), had a foot go down. (Side note: As I was reading back over this I thought it imperative that I tell you that Joel is a Grampy's Boy. Always and only wants Grampy when Grampy is around. This is why my dad was carrying him.) The trouble was that he was carrying Joel and so not balanced. As he went down he twisted (he did a really good job at protecting Joel). His knee (which was already bad) got the worst of it. He couldn't move for awhile so Isaac got down on his knees and dug Dad's foot out. (I just happened to have the camera in my hand so I captured the whole ordeal.)
Joel seems to have this incredible sense about when people are hurt and so he went over and started kissing Grampy. After he was done kissing Grampy, Joel sat in Grampy's lap with a worried look on his face.
It was hard getting Dad out of the snow and to the car. Isaac went ahead compacting the snow so he wouldn't have any more unexpected sinkholes. This picture demonstrates the problem perfectly as you can see my mom's right leg had sank up to her knee.

My dad spent the rest of the weekend in a chair in the time-share. He hasn't been able to put his full weight on that leg since and still can't bend the knee. He did see the doctor when we got home and the doctor said possibly a bad sprain or a torn tendon or ligament. Please pray for him to heal quickly as it is very painful.

Also, please pray for my mom. She saw the doctor this week and still has the pneumonia she was diagnosed with in January. With my dad not being able to walk she has to do all of everything herself which means she isn't resting like she should.

Another prayer request: I just got a call from my mom and my grandpa is in the ER right now with pains in his abdomen. He was already in a skilled nursing home with Pneumonia.

To top this all off...I have had a really bad week. I have had a really bad cold that I caught from my mom....................I'm going to leave this to another post. Thank you so much for your prayers for us. I can't tell you how much it means to me that you visit my blog. Thank you and all my love.

Hope you enjoyed the slide show :)

Wordless Wednesday: Our weekend in Big Bear

DRINKING FROM A STRAW!!!

I am on my way to bed but wanted to let you all know that Joel drank from a straw today (Wednesday)! It may not sound like much to some of you, but it is. I have been working with Joel for about a year trying to teach him to drink out of a straw. To date he had either wanted nothing to do with it or got really frustrated because the drink wasn't coming to him. The concept of closing his lips around the straw AND sucking is really complicated. Well, over the last month or two Joel has decided he really likes anything we have in a cup that has a straw in it (probably because it is usually some kind of drink with sugar in it). So when he wants it I have been encouraging him to drink out of the straw. Every time I have done that he has pushed it away and fussed because he wanted me to give it to him from the bottom of the straw with my finger over the top (you know how you do it with little babies). Today was totally a God thing. We were shopping at Costco for our trip (we are going to Big Bear this weekend to hopefully show the kids some snow) and as we were headed out I was craving something from the Food Court. Well, I am trying to be a good girl so I resisted and went and loaded the car. As I was loading the car I saw something in the car I needed to return, so I went back in and made my return. Resisting two times just wasn't possible so as I headed for the Food Court I was trying to decide what I was going to get. I was really hungry, but knew dinner was going to be soon, so I decided not to get a hot dog. I fully intended to get a soda as I entered the line but at the last possible moment something (or should we say Someone) told me to get a berry smoothie instead. I did and as soon as Joel saw it I knew I wouldn't get much of it. Mmmmm, mmmm is the sound he makes when he wants something, and this was a very loud mmmmm. The great thing was that the smoothie was so thick that after I sucked it up in the straw he could get some by biting the straw. How is that good, you ask. Well, after working with him about ten minutes and coaxing him to suck, HE DID! And once he did it, he did it again and again (with some biting interspersed...note to self, get two straws). He looked so proud of himself and he was enjoying it (and being cheered on) so much that I stood in Costco parking lot for almost half an hour holding the cup for him and encouraging him to suck from the straw. These are the rewarding moments when all the hard work melts into the background and it's all worth it. HE DID IT!!! No Wordless Wednesday today! And by the way, if I had never gone back into the store, or given into what I thought was temptation, or listened to that little voice telling me what to get, none of this would have ever happened. Thank you, Lord, for giving me a little push and blessing me today. Isn't God incredible?!

Getting into trouble...

...and loving it. Joel has been a naughty little boy lately. He's been throwing food down from his highchair every chance he gets. I talked to his OT about it and she said it's a developmental stage and then quickly followed with strategy for how to put a stop to it. He's also recently discovered my drawers in the kitchen and that they hold some fun "toys". Every time I walk around the corner he's into them. It's not so bad except now I am doing way more dishes because one of the drawers holds my utensils. As much as it is a pain, it's a great sign about his development. Discovering that the drawers are there, that there is something new to play with in them, and having the constant curiosity to keep coming back is so much better than him just not caring. So, even though he's getting into a lot of trouble lately, I am thrilled with him and his development. :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)