Camping

We are attempting our first camping trip with Joel. We are leaving right now and will be back in a week-and-a-half. I will post all about camping life with a special needs child when we get back. Have a great week. .....on the road again...I just can't wait to be on the road again...

VBS on Outrigger Island

Outrigger Island is this year's Vacation Bible School's theme. It's fun!By the way...in the background you can see the trailer where my parents have lived since the fire (in our church's parking lot).

Sorry I can't post this week. I have been super busy and EXHAUSTED. I am leading music for our Church's Vacation Bible School. And it has proven to be exhausting. Add to that Jason (and I think now Joel) are sick with colds that are going around VBS. Then there is the fact that I think Joel is having seizures again (so I am having to make extra calls to doctors) and Joel has been difficult this week. Then there is the fact that this is Isaac's fourth week working 5 hours away from home. And I am not getting enough sleep because of all my responsibilities...soooo you can see how I am so exhausted and don't have time to post until probably Saturday. We could use some prayer in this family. Thank you to all of you who visit this blog and follow our story and thank you to all of you who pray for us. You are a huge encouragement to me.

Joel's Surgery...and more pictures

I have been fielding some questions about Joel's surgery lately which has really got me to thinking about it. I realize that I have never really posted details and I have been thinking that I would like to help people who may be in the situation where the surgery may need to be considered. So, very soon I will be doing a several part post about his surgery. It really changed our lives! :)

Here are some more of my favorite photos from the last month:

My sister-in-law and I did some (TONS) of canning.
I am going to have to post about it 'cause I have tons of great pictures.

Jonny broke his ankle. What a pain...literally (and figuratively)!

My boys!

Joel likes Grampy's hat...or any straw hat for that matter.

Brothers, aren't they cute together!

I've got to run to Joel's OT (Occupational Therapy) now, but I still have more pics I want to share with you later...that's the problem with not posting for a month and being a person who LOVES taking pictures. Now sharing them all at once for you it seems like a lot, but really it's no more than I would have shown you if I had been posting regularly.

I'm back...

...and can't believe it's been a whole month since I've posted. I am so sorry. This past month has been very difficult in many ways and I just didn't have time to post due to added responsibilities. I am extremely exhausted right now, so I will leave you with some of my favorite photos from the past month and I will try to write an update in the next few days.











More to come...

Happy 5th Birthday, Jason!!!

I can't believe you're five today. You are growing up so fast and I love the young man you're becoming. You have such a sweet spirit and I love how you love to have fun. You're giggle makes everyone around you light up with huge smiles and joy. Your brothers love you and enjoy playing with you. I love how you guys are such good friends and how well you get along. My prayer for you is that you will continue to love the Lord with all your heart and that you will hunger to learn more about Him as you grow. God blessed me and Daddy so much when he gave you to us. I thank him every day for you. I am enjoying watching you become more adventurous, outgoing, and imaginative. I hope you had a great day today. I'm looking forward to your first train ride and the beach on Saturday.

Love, Mama
Note: We had a fun day today spending time as a family, then we had a special family dinner. Our tradition is the birthday boy (or girl) gets to choose their favorite food for their birthday dinner. Jason chose KFC and brownies. I would have preferred to cook something, but that's what he wanted. On Saturday we will finish his birthday celebration. We have another tradition we started with Jonny. Each child gets his first train ride on their fifth birthday then afterwards we take a picnic to the park or beach. Jason wanted the beach with sand and since Jonny currently has a cast on his ankle and can't go in the sand we modified our plans from going to a beach on Coronado to going to La Jolla Shores. La Jolla Shores is a great beach that has a grassy park-like area as well as sand and swimming. It's a wonderful beach for little guys because it's shallow for quite far out and it has nice sand (not too rocky). We are all super looking forward to Saturday. My mom and dad will spend the day with us. Happy birthday, Jason! We love you!

Living with TSC...

...is often an emotional roller-coaster. There are highs and there are lows. Today and the last few days I have been in an emotional low. It's hard to blog when all my emotions are feeling drained. We've been having more doctor appointments than usual and I'm exhausted. So I will do my very best to give you a long update tomorrow evening. We saw a Pediatric Neuro-Ophthalmologist yesterday and I want to tell you all about it.

Jonny's Piano Recital

Look at my handsome boys! Growing up so fast.

Jonny with his buddies, Jacob & Josh.
(L to R Jacob, Jonny, Josh) It's fun to have twin friends.
They also take piano lessons from my sister-in-law, Dorinda.

Jonny had his end of the year piano recital last night. Sadly Isaac missed it due to being out of town working for a few days. I recorded Jonny playing so Isaac would still be able to see it. I am so proud of Jonny. He is such a wonderful, sweet boy and his piano skills have greatly increased. He went from never having played last summer to what you see in the video. He completed his first lesson book just a few weeks ago. Way to go, Jonny! I love you, sweet boy!

P.S. It's fun to be able to take piano lessons from your aunt!
P.P.S. You will need to pause the music on the blog before watching the video.

Good News

I went to visit my grandma today. Before I left Jason overheard me telling Isaac were I was going. He looked at me with a little grin and said "I would love to go visit Grandma with you because she likes me and it would make her happy to see me." How do my boys know just how to melt this mama's heart? :) I asked Jason if we should take Grandma a rose out of our rose garden and he though it was a great idea so he helped me choose which one (or ones - they were on the same stem). He carried it all the way from our house to her bed. He is one cute four-year-old. And Grandma loved seeing her great-grandson bring her roses. As we were getting in the car to leave I was scolding Jason for being shy with Grandma and he said to me "I haven't seen her a lot lately. That's WHY I was being shy with her, Mom."

Grandma looked great. She had the hip operated on this morning and it was a much smaller break than last time, so it should heal faster this time. Wonderful news. :)

Please pray...

...for my grandma. She and my grandpa lost everything when their home burned to the ground in the devastating Rice Fire during the San Diego Firestorm last October. Then in January she fell and broke her hip. She was finally starting to get around again (and even made it to church the last three Sundays). Today I got a call saying that she fell again and was in the ER. She has now broken her other hip. So, she will have surgery in the next few days. I worry about her. I love her very much and I know how hard it was for her to recover from the last hip break. Now she is weakened from just getting over that so I am fearful that at 85 she won't have the strength to recover. Please pray. The picture below is of her home that burned down. She told my mom after the fire that she felt like the fire had aged her ten years in just a couple very long weeks. At my grandparents age there is no such thing as rebuilding the lifetime they lost to the fire.

Joel's Developmental Evaluation

On Thursday Joel had the developmental evaluation that we've been waiting about nine months for. He did really well, even showing skills I didn't know he had. He impressed his mommy! It took about 3.5 hours and was totally exhausting. Both of us were exhausted.

The results: Joel was diagnosed with Developmental Delay. (We already knew that.) He was also diagnosed with a mild case of Pervasive Developmental Disorder, Not Otherwise Specified (PDDNOS). This is on the Autism spectrum but he barely qualified and I'm not concerned. He is still the exact same baby as before we got the diagnoses. Something to take into consideration is that a lot of behaviors that could look like Autism could be caused by his visual impairment. They have a lot of side effects that are the same. So I am not sure that he actually has PDDNOS, but it's okay that he was diagnosed with it because it may help him qualify for more services. It also could effect the way I teach him, so I'll have to do some research.

Here are his levels of development based on the Bayley Scales of Infant Development -III:
Cognitive - 18 months
Receptive Communication - 15 months
Expressive Communication - 14 months
Fine Motor - 15 months
Gross Motor - 18 months
Joel is 32 months old and if you take away the 15 months that he had non-stop seizures and wasn't learning it would leave 17 months that his brain has been able to process information. So I think he is doing wonderful and is an amazing little boy! Side note: It actually worked out really well that it took us so long to get the evaluation because he needed to test at the 18 month level in cognitive thinking for the Autism evaluation to be accurate. And he did! A month ago he wouldn't have. It was suggested that we continue all that we are currently doing as well as start speech therapy.

I love this picture taken on Mother's Day. It has nothing to do with this post, but I like to post pictures because I think it makes the blog more interesting.

Internet problems

Sorry I haven't been able to post in the last few days. I haven't had access to the internet. We've been having problems with our connection. I am going to post today if the internet continues to work. We had an interesting day yesterday and I want to tell you about it. Joel had his Developmental Evaluation for Autism. So I will work on this post and get it up as soon as possible.

My Miracle Boy

Yes, I know his face is messy.
It was the first time he fed himself with a spoon!
But look at that JOY.

This is his playful, silly face. A face that I want to cover in kisses. My little goober was in a great mood that morning (he does like oatmeal)!

Miracles can happen to those who love the Lord.
Blessed are they that believe in Him, His kingdom shall be yours.
(Miracles Can Happen by Sandi Patty)

This part of this song floats around in my head often. My favorite part: miracles CAN happen. Now, I'm not saying miracles WILL happen to those who love the Lord. I am saying they CAN happen. I have been blessed by seeing multiple miracles happen. Most have been through Joel. It is not easy to be a parent of a child with special needs. But it definitively has its rewarding moments and God has given us many of these.

There are too many to list, but I will highlight a few. It's a miracle...

...removing almost a quarter of Joel's brain stopped the seizures. He had constant underlying seizures with various other seizures approximately 4-30+ times every day from 6 weeks old until December 14, 2006 when he had the surgery that God had led us to. (That's a whole post of it's own!)

...removing so much of his brain didn't impair him further. A test before the surgery revealed that part of his brain wasn't working. When they removed the large tuber the surgeon said it was calcified and the brain tissue surrounding it was irritated. This explained why he had almost no control over his right hand and why he used to stare at it for hours...it probably had a funny feeling in it. The fine motor strip (area in the brain that controls fine motor skills) was irritated. Gradually after the surgery as the irritation went away he regained use of his right hand and stopped holding it up and staring at it. He still prefers his left hand, though.

...Joel can walk and run. The first fifteen months of his life we didn't know if he would ever do these. All he would do is lay there like a lump. Sometimes he would play with a rattle or small toy for over an hour (which concerned us about Autism). He didn't sit up until fifteen months old (a week before his surgery) which scared us. It's a miracle that Joel crawled two months after surgery and walked four months after that (six months post-surgery).

...Joel can see. Pre-surgery we didn't know what Joel could see. We knew that he could see light but we didn't know if he could see anything more. He never focused on faces or much of anything. He didn't interact with us at all. We didn't know if it was because of the seizures or very poor eyesight. Since the surgery we know for sure that he doesn't have any eyesight in the right side of both eyes, this is because the part of the brain that controls that was removed during the surgery. But we also now know (the Dr. said he believes) that the eyesight that Joel does have is good. :) Some days it is better than others. If he is tired, not feeling well or over-stimulated his eyesight will become worse and he gives a lot of blank stares, but when he is feeling good we know he can see. His eyesight is a bit slow and it is hard for him to follow with it, but it improves every month. I get tears of joy every time he looks deeply and lovingly into my eyes and gives me his sweet little dimpled "I love you, Mama!" grin.

...Joel smiles! A smile was very rare pre-surgery but now is a regular occurrence. I sure LOVE that dimpled grin!!! He is one little boy who now enjoys life and knows what joy feels like!

...he likes to play. Joel has made a connection to his family members. He likes to play with his brothers and he even gets jealous of Jason. This may not sound so great to you...but it is. It means his thinking is complicated enough to have that emotion and have the spunk to do something about it (like get Mommy or Daddy's attention). Through a special type of therapy called Floor Time he has made a special bond with me. Floor Time teaches my how to play with him where we can connect and interact. It helps increase his communication. And boy has it helped. When we started it (about 6 months ago?) he was not connected to me emotionally. We had both been through a lot in his little life and that special bond had simply never formed. I was his caregiver but he thought he didn't need me for anything else. Thus, he didn't communicate with me, he didn't like to play with me (or anyone else), he would only play with a toy if I put it in the middle of the floor and left the room so he was alone. Now it's a whole different story. He LOVES playing with me and doesn't want to play by himself. He makes eye contact, he grins at me, he even laughs at me. He gives me kisses while I play with him. The teachers who are teaching us Floor Time even commented today how much they saw the connection between us and how sweet the loving looks he gives me are. That in itself is a huge miracle.

...Joel is doing so well with Gross motor skills that he graduated from physical therapy last November. A mere 11 months after surgery. Not only can he walk and run, he is now an expert climber, he loves to throw balls and he has just started kicking them.

...he is doing excellent (for him) in occupational therapy. We worked for about a year on getting him to drop a toy into something, anything. I started to feel like he never would. The goal was a shape sorter. Well he now can do a shape sorter with two shapes and he is great at (and loves) dropping things into other things. :) He has also conquered many difficult cause and effect toys. Even though he is still really behind his age group, his fine motor skills are starting to catch up. Miracle!

...it is looking more and more like he isn't Autistic. The Autistic features he has had his whole life are slowly disappearing. What's more, I have discovered through an excellent Vision Consultant who God placed in our lives that most of the concerning behaviors can be explained by his visual impairment. That other children with visual impairment have the exact same difficulties. 1 in 3 people who have Tuberous Sclerosis also have Autism. Those are high odds and along with behaviors we were seeing we were concerned. But amazingly (God IS amazing!) those behaviors no longer concern us.

...Joel is starting to talk. This miracle is the most recent and I am still walking on cloud nine. Again, this is a result of Floor Time. We were really starting to feel like we would never hear his sweet little voice forming words. As he is approaching three years old it really concerned us that he didn't have any words (other than an occasional "bye-bye", which became rare). In the last month he has gone from pretty much no words to a small (very cute) vocabulary. I would say he now has about 20 words including animal sounds. And sometimes he imitates words we say really well. Even if we don't hear them again he is learning.

There are so many more but this post is already way to long. I would like to tell you one last thing about what God has done in our lives: he sends along just the right person at the right time. He has granted us with wonderful doctors and especially wonderful therapists. He has given us a wonderful support system (our family, church, friends, and even the Tuberous Sclerosis Alliance in Southern California). He has guided us to exactly the thing Joel needs at the time, whether it be surgery or a certain type of therapy. He has guided our footsteps and been with us every step of the way. THAT is truly a miracle.

P.S. One last miracle. Joel is feeding himself with a spoon now. Started doing this about three weeks ago. Messy but wonderful.

Indio Weekend: Part II ~ Slideshow

Where did I leave off?

Oh, yeah. It was just before our Indio trip. Sorry it's been so long...when we came back Jason was sick, then we had internet problems, and now I am sick. But I will attempt to catch you up anyway...

On Friday our trip to my parents Indio timeshare started with us meeting them, Jonny and Jason (they left with my parents on Thursday) at the Palm Springs Aerial Tramway. It was awesome! Makes your knees tremble a little, even for someone who's not afraid of heights, but my mom who is afraid of heights would be the first to tell you it was definitively worth it. The view is gorgeous during the ride and once you get up to the top it is a totally different world. We did some hiking on the trails at the top, took some pictures and throughly enjoyed being in back country without having to do the work (read: hiking) to get there. ;) It was beautiful. At the end the boys enjoyed some rock climbing...all three of them. :) To anyone visiting southern California, I would highly recommend visiting Palm Springs and taking the Aerial Tramway. Warning: Take warm clothes...you are visiting the top of a mountain, after all. It was 80 degrees at the bottom but 50 degrees when we reached the top. Now that's COLD for someone born and raised in so. Cal. LOL ;) Hope you enjoyed the slide show.

Beauty & Joy

I love this picture because all I see when I look at it are beauty and joy. Look at those eyelashes and cute baby teeth. I love when he smiles. Look at that gorgeous curly hair. I love his curly hair. I've never told you but one of his nicknames is "Curly". I love how he is being playful with Daddy in this picture. This picture was taken at the San Diego Zoo on Tuesday. It was a field trip/family day. God's timing is perfect, you see we decided a little over a month ago that Isaac would take the day off work to go with us. Jonny was going on a two hour behind the scenes tour and needed an adult to go with him. The little guys were too young to go on the tour and needed an adult with them. Since I can't be in two places we had decided Isaac would go. Guess what happened. Isaac had most of the week off due to lack of work. Not a great situation but couldn't have come in a better week since we had the zoo on Tuesday and today we are leaving for Indio. Actually, we are supposed to be leaving in an hour and I'm not packed yet...so I better go pack. I'll leave you with more pictures from the zoo. We had a great time! (And by the way, Jonny wants to run a zoo when he grows up...perfect field trip for him!)

Thank you to my wonderful husband who watched the little ones for two hours while I went on the behind the scenes tour with Jonny.

Mommy (me) & Jonny on the tour.

We got to pet the camel!

Why is it that the reptile house is always a favorite with little boys? Both of my boys want to work with reptiles when they grow up.

The hippo was awesome!

Sweet Little Boy

Grammy reading to my little book worms.

I feel like I need to tell you that despite my last post (where I talked about behavioral issues) Joel is still an extremely sweet little boy. Most of the day is filled with kisses from him to me and shared smiles. The few temper tantrums he has in a day is completely offset by all the love flowing out of him. When he smiles he has the most wonderful dimples at the corners of his mouth. I love to kiss them. I love him with all my heart and more. I love him so much that I am always watching and evaluating him so that I may catch any issues immediately because in everything the sooner it is caught and treated, the better it is for him. My sweet baby boy.

Joel is changing...

...in so many ways, lately. He is doing several new things just since the last time I posted. On the good side he is saying more and more partial words. He now says "Dada", "Mama", "momo" for more, "outsss" for outside, "issss" for this (like when he wants something he'll say "issss"), "pu" for up, occasionally when eating he'll copy us with "mmm mmm mmm" or "ahhh", and he used to say "Bye-bye" but I haven't heard it in more than a month. It's the second time he's lost bye-bye. This is the interesting thing about Joel. I don't know why it happens and I haven't heard a good explanation from anybody I've asked, just some guesses. He has had several words that I have heard anywhere from one to one hundred times and they just disappear. I have no idea why. The speech part of his brain may have been removed when they did his brain surgery, but we don't know for sure. Just speculation. A couple weeks after his surgery Joel was saying "Dada" but speculation is that he was just experimenting with sounds. About three months after surgery Joel looked deep into my eyes with the most loving look and said "Mama". That was the first time I heard him say mama and it melted my heart with the look he gave me. I know he was calling ME mama. I know it because of the way he looked into my eyes when he said it. Joel doesn't look deep into our eyes often. In fact it almost never happens, so I know it was for me. But speculation says that he was probably just experimenting with sound since we didn't hear it again for 12 whole months. His surgery is now 16 months ago and he seems to be pretty much on track with a child about that age. But then how do you explain his words he said so soon after surgery? And why did he say "bye-bye" for more than a month with waiving and then just had it disappear for more than 3 months? I don't have any answers. Joel is very complex and this area is a mystery not only to us but also to his therapists and doctors. Good things happening lately also include his using gestures to direct us to what he wants. If he wants a toy from his toy bookcase he comes and makes us pick him and up and then he uses his upper body to take us to the shelves he can not reach which hold his favorite toys. If he wants to swing (which he LOVES, by the way) he will come get me and take me to the swing and pull on me and protest with his voice (anywhere from whining to screaming, if I'm not fast enough) until I put him in it. I love that he is communicating with us what he wants. What I don't love is the not so good things happening around here. Joel has started throwing temper tantrums. When he doesn't get exactly what he wants exactly when he wants he totally loses control. Deliberate screaming and uncontrollable crying is happening more and more. Often he gives me a look before he starts...the look that says you are not giving me what I want and I'm gonna let you have it because I'm mad. It's hard to figure out exactly what is going on. Is he just catching up developmentally and starting to act like a two-year-old? (We all know about the terrible twos.) Or, is he frustrated because his thinking is more advanced than his communication skills? Or could he have the start of behavioral problems? This last one is one of my biggest fears. Many different behavioral issues are linked to TSC (click here to read about it on the Tuberous Sclerosis Alliance website) including aggression, sudden rage, hyperactivity, attention deficit, acting out, obsessive-compulsive behavior, repetitive behaviors, staying in their “own world,” being nonverbal even at an age when most children are speaking, and other autistic behaviors. Please be in prayer with me that these temper tantrums are just typical two-year-old behavior and not a behavioral issue from the TSC. Also, please pray that my fears will be quieted and that God's peace will come over me as I deal with this newest behavior. Thank you to everyone who is reading this blog. I have had Tuberous Sclerosis Awareness on my mind and heart lately and I am feeling led to focus more on this. I would like to help other families who are dealing with seizures and/or TSC, visual impairment, autism. If you know of any blogs dealing with these issues could you leave the address in the comments...I would like to put up links to other people dealing with these issues. Thank you. PS I forgot to mention that Joel has become a book-worm. We moved the board books out of my older boys room and into Joel's room and he decided he was ready for them. He now follows me around the house with a book wanting me to sit and hold him and read to him. I LOVE IT! I was worried that he wouldn't develop a love for books (or even like them) like my other boys do. I believe that reading or even being able to sit and be read to is a key to education and I think this new interest will open new paths in his brain and help him learn in new, wonderful ways.

Doctor visits...

...seem to be the theme to my life. Joel and I both had appointments this past week. We both got good news. My heart is fine. It is good structurally and in good condition for my age. I do have SVT (Supraventricular tachycardia). It can be caused by caffeine, but since I cut that out about a month ago and am still having the irregular heart beats it is most likely caused by "emotional stress". Imagine that. Stress. For those of you who have just recently started reading this blog and haven't seen my other blog, I have had more than my fair share of stress in the last 2+ years. Joel was diagnosed with Tuberous Sclerosis at nine weeks old just over two years ago (November 2005), had seizures non-stop until doctors removed almost a quarter of his brain in December 2006. In October 2007 wildfires raced through southern California destroying both my parents and my grandparents homes (my parents are still living in a trailer in our church parking lot). Mix with that Isaac being out of work a lot (the last several years haven't been great but 2007 was our all time low since starting in the construction trade and owning our home) and many medical bills over the last couple years. Also mix in weekly doctor visits, therapy, therapy, and more therapy for Joel and add the fact that I am home schooling the boys (there...I said it...I'm outed...and this is likely the last time I'll say it for our safety). See what I mean when I say STRESS! So the prescription for my heart is to take daily walks of 30 minutes to try to alleviate some of the stress. (The problem is that trying to come up with the time to walk is adding stress.) Oh well, at least nothing major is wrong! :) Joel had a renal (kidney) ultrasound a week ago. He saw the neurologist on Tuesday who told us the results of the ultrasound were normal! And, I don't remember if I told you that all the blood work came back normal! So everything is looking good for his kidneys. :) Yeah! Only problem is that the blood in his diaper for a week is still an unsolved mystery. The neurologist did say that small kidney stones wouldn't show up in an ultrasound and it is a side-effect of the anti-seizure med he is on (Zonegran). (To explain the blood, I am thinking that maybe he passed a small kidney stone.?) He suggested doing a CT Scan of Joel's kidneys but that would require anesthesia. After discussing it and noting that there is nothing to do but take him off the medication (which we are trying to do anyway) if we were to find small kidney stones, and since he hasn't had blood in his diaper for almost two weeks, we decided that IF we see any more blood at all we will go ahead and do the CT Scan, otherwise we will leave well enough alone. Other than his kidneys, our visit with the neurologist wasn't too encouraging. I think Joel has been having great improvement in the development area. But, as soon as that was out of my mouth, the neurologist started asking me questions like "Can he talk in sentences?", "Well, can he talk in phrases?" (the answer to both of these is "no"), "How many words does he have?". When I answered with " about 4 or 5" I got raised eyebrows from him. Other questions about his development went about the same as this. Here's the thing, it's not about what he can't do...it's about what he can do. He can walk, run, climb, kiss, smile, say "Dada", "pu" for up, "out sss" for outside, and "ma" for more (only sometimes when he really, really wants something). He is imitating and he laughs when other people laugh at him (I have been informed that this is showing a sense of humor which is a stage of development). He can put the stars on his stacker toy and he can drop the coins into his toy piggy bank (finding the slots is hard work). He can even do an easy shape sorter although we are still working on this one. He is now playing with me when before he would only play with a toy if he was alone in the room. He seeks me out to play with him, help him, and just give him attention. He communicates with me in whatever way he can (mostly in body language). For a child who we are wondering if he has autism these things are huge. (And largely in part to a type of therapy called Floor Time. I am a huge advocate of Floor Time. I will post more later explaining what it is.) But the neurologist didn't seem to see all these things as the greatest progress. He asked if he has had the evaluation for autism yet, which he hasn't. It is scheduled for the end of May. It was discouraging to be discussing autism instead of all the great progress he has made. I decided that in the end he is the same child that I went in there with and autism or not, he is making great progress. I am sorry that it has taken me so long to make this post...I know that you all were waiting to find out the test results. It took me quite a while to process the results of this week and I was trying to cut down on my stress (since it was a rather stressful, busy week...tax season just makes things worse) by completely avoiding the computer. I think this is the first time I didn't even turn on the computer for three straight days since we bought it. It is good to be back though and thank you for sticking with me. Annie

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