Bouncy Bella

The 30 hour famine was awesome and a lot of work....but WORTH all of the time and effort we put into it. I was only sad that I couldn't be there the whole time with youth, but motherhood is MULTITASKING and most of my babysitters were at the famine, so we made do.

My arms ache tonight from holding Bella most of the day. I don't think she is feeling too fabulous. Her nose is running and she is congested AGAIN. I hope another ear infection is not in my future. She is sleeping now along with her brother and sister. Grace put herself to bed tonight (that is how much we wore them out). Luke went straight to bed and announced how tired he was. I told him that he could feel free to SLEEP IN (he is my 5:30am riser). After burning the midnight oil for 2 consecutive nights, I am ready for bed too. BUT I couldn't help but post this video of Miss B, bouncing away in her exersaucer. Out of all the babies we have had, I have never seen a baby use the exersaucer like this. I totally cracks me up!!!!

We Have One Life.... Do Something

Today and tomorrow, Mark and I are leading our youth in World Vision's 30 Hour Famine. This will be our 4th year leading the event and probably our 8th time participating. This year's planning has left me an emotional mess at times, as I have grieved in my heart for these children. It is such a simple solution. A problem that is 100% preventable. Unfortunately 24,000 children die each day. And 24,000 died yesterday and will die tomorrow. But today...I choose to do something about it. I will stand up for those kiddos that are in desperate need of food. That is why I organize this event for our youth group. To make a difference. Last year our group raised almost 1800 dollars. That made the different in the lives of 6 kids. That money fed those 6 kids for a year. This year our goal is 2000 dollars. I am excited for this weekend and to see the lives of the kids in our youth group changed and the lives of kids across the globe changed.

A Blessing

I am sitting here at the computer, starring at our NEW monitor....thank you Auntie Katie. It is AMAZING!!! What an awesome blessing today to arrive in the mail. I am so appreciative. We have been using a really old monitor that you could barely see at times. And now everything is HUGE and crystal CLEAR. Thank you.

So, my attempt to keep up 2 blogs backfired. Who was I kidding? I can barely manage one, let alone two. So I imported the posts I had from the blog about Luke, and I figure you all will understand if I post a little more about him as I process what we are going through.

I have to share how proud I am of Grace. She is reading little books and doing an excellent job. She read this little book to me tonight and after she finished reading it she exclaimed, "Now I can start learning to read." I said, "Gracie you are reading!" She looked at me and asked, "I can read now? I CAN read now." Then she shouted down the hall to Luke that she knew how to read, to which he replied back, "well..you can't read as good as me." And from there, I am afraid, a shouting match between who could read and not read. Why can't they just get along sometimes? Ugh...the constant bickering is difficult on me sometimes.

Luke is still crying over the eye drops. Some nights he is a champ and some nights I almost have to wrestle him to get him to hold still long enough to insert the drops. I wish I knew some magic trick to make things better.

Bella will be 11 months old tomorrow, and I can't even comment on that :( Time is rushing by at lightening speed.

Our First Moment

(How Luke looked the first time we met...2003)

We faced each other, starring eye-to-eye. He looked at me so intensely, almost like he knew me. I starred back, unable to move, my breath catching shallow in my chest. I had never seen him before, nor had he ever seen me, but in that moment, I knew without shadow of a doubt I was looking at my son. I stood facing him, and he studying my face so intensely, for what seemed like hours. Finally, his sweet foster mom's voice broke the silence, "I just thought you two should meet." "Thank you," was all I could whisper. I was too caught up in the importance of the moment. And then as quickly as it began, she was gone, he was gone.

I had been working at a small store the day Luke walked (well carried) into my life. He was 8 months old and had already endured more struggle, heart ache and challenges than I could relate too. I questioned my ability to be everything he needed, but his happy disposition left me feeling as if he were saying, "Come on mom. I've been waiting for you. Let me introduce you to my life and we can figure it out together." So, I did what any good mom would do. I took a blind leap of faith and jumped. Since that moment, I haven't looked back. We keep pressing forward, him and I. One therapy after another, one doctor's appointment after another, one tear after another. We stand hand in hand, mother and son, walking a path neither one of ever intended to take, but one that neither of us would have ever wanted to miss. I have the privilege of being your mom Luke. I count it the biggest blessing in my life that somehow God saw me fit to be your mother. People have told me that you are blessed to have found us, but I am the one that has been enormously blessed to have found you. Luke, thank you for letting me be your mama.

An Answer

I just had to share the most incredible news. Less than 24 hours after posting about Luke's therapy, I received a message from my good friend Maryjane that one of her staff assistants has a pair of therapeutic listening headphones that she is going to GIVE to Luke!!! I am so excited, humbled and grateful that a perfect stranger would offer an incredible gift to Luke. I am so thankful for the kindness and generosity of this lady. Thank you for helping Luke have a much needed tool.

Therapy Thursday

Every Thursday, the four of us (Luke, Grace, Bella and myself) make the drive up to Legacy Salmon Creek Hospital. We park our well loved green mini van in the parking structure, hall the stroller and diaper bag and anything else that we might have brought along, across the sky bridge. Walking across the sky bridge immediately brings back memories of going to my doctor's appointments during my pregnancy with Bella. Therapy and my OB-GYN are located in the same building. When the automatic doors open up, the kids fight over who gets to push the the button for the elevator. After breaking that argument up with talk about turn taking, we proceed down one floor. Our large entourage enters the little waiting area in Suite 200: Pediatric Rehabilitation. They know Luke by name so check-in is a breeze and he begins talking with all the other kiddos waiting their turn for therapy. Luke knows no stranger.

Luke eagerly anticipates Joy's arrival. Joy is his occupational therapist. Occupational therapy is designed to help kids with challenges in fine motor movements (such as writing), vestibular difficulties (such as balance issues) sensory difficulties, etc. She helped me realize that Luke had tics, which lead to a referral, which resulted in a diagnosis: Tourette Syndrome. This particular Thursday, Luke was having a lot of tics. His therapy began with work on a swing. He had to propel himself through space using his core muscle groups. He played a bean bag game which required visual tracking and motor coordination. (See picture).

Next he cleaned up the bean bags by having to make baskets into the container. He thoroughly enjoyed the challenge of this activity and was exuberant about his participation.

Next Luke was put into a "body sock". This helps give pressure and information to his body about where it is in his environment. This "body sock" began calming his sensory system down after all the excitement with the swing. He did several activities while in the bright blue sock. Isn't he cute? This mama thinks so!

The last part of therapy was conducted in Joy's room. Luke practiced shoe tying (which he was successful at), writing and letter formation. Pictured below, Luke is using a therapeutic listening program. There is very soft/faint music playing in the background in specific tones. This helps with attention and concentration. He is working at unscrewing these nut and bolt type toys. This help his fingers with dexterity and helps his brain get his fingers in the right mode to work on handwriting. They are always so good about giving Luke rewards and fun breaks that keep him motivated to keep working and improving.

Before I knew Luke, I never knew places like this existed. I didn't know about therapy and rehabilitation. Luke introduced me to this world. A world that he has always known. Luke was 5 months old when he began therapy and has been in therapy every since. We did take one year off last year, and unfortunately this mama knew that he needed to be back in therapy so we jumped through all the hoops to get him to this new place (which I LOVE!) I have been all over to many different places but this therapy center is awesome. The staff is so supportive and they love Luke. I am so grateful for the help he receives and the support I receive. They are truly a blessing to our family. So you might be wondering...what does therapy like this cost. Well...it is $340 a session. A session is 1 hour. I praise the Lord that we are blessed to have insurance that cover most of the cost. Somewhere I need to find $135 dollars to buy the listening program for him. Unfortunately, things are tight for us right now, so the program will wait, but I have faith that Luke will get the listening program in the near future. I heard I can try craigslist for the headphones and cd's. That would make them cheaper. I think as Luke's mom, that is one of the most difficult parts of raising special needs kids...money. I see things that can benefit him, like the listening program, but everything costs money. And I am one that has a difficult time feeling guilty and then it makes me feel like a bad mama because I know something that would make life better for him, but I can't afford it. Money, or lack there of, has been the main drawback to me staying home this year. Ugh. So... there you have it. My first big vent about what would make things better for kids with special needs. Money...a necessary resource that is in short supply at our house :) I know money isn't everything and I am truly thankful for everything I have, but some days it would be nice to buy some of the things that would help Luke.

The Great School Debate

I have come to the conclusion that there is not a perfect option for Luke and school. Basically you have 3 choices. Public, private and home school. Unfortunately, we have tried all 3 options already with Luke, none proving to be a match. As his mom, I long for an answer to this issue that keeps me awake in the middle of the night, that causes me grief and anguish over how to provide the best learning environment for Luke. An environment where he is supported, cared for and feels safe enough to engage and relaxed enough not to tic as much. But alas...I feel defeated. I feel as though I have failed him in this area.

Private school affords Luke the luxury of small class sizes and a caring and supportive staff with students who like him, but there are no special therapies, classes or teachers trained to guide Luke through his disabilities. Private school is also expensive and adds stress to our tight budget. Not saying that we wouldn't sacrifice. We would. Unfortunately as time continues on, and Luke's diagnosis' keep on coming, private school becomes less of option due to the disabilities and special needs.

Public school offers a free and appropriate education (according to the law). This is the realm to which I am most familiar...in fact trained in this realm. Unfortunately the class sizes are large, kids are cruel and hurtful with their words, and fighting special services tooth and nail can be discouraging. The last thing I want to do is crush Luke's spirit. He already is vocal about his dissatisfaction of school. The other issue is the massive amounts of budget cuts that are happening throughout our state. I have a difficult time figuring out what else they are going to cut. It seems to me is that our students are the one's that are missing out.

Home school is an option, and an option that I read many children with Tourette syndrome choose. The downside of home schooling Luke is motivating a child to work with all the distractions of home. It was like pulling teeth to get him to decide to work. The other is the lack of down time for me and time to recharge my batteries before racing 100 miles an hour alongside Luke. This is not to say that I wouldn't home school him if it was the best choice. The problem is...I DON'T KNOW WHAT THE BEST OPTION IS! Why is it so difficult to figure out.

Currently Luke is in public school. He is going through testing to re-evaluate him for additional services through our school district on his IEP (Individualized Education Program). I need to know as his mother and educator where he tests at. I am hoping this information will help me make the best placement/decision for Luke.

If there is anyone out there reading that has a suggestion, I would love to hear it. I open to any advice at this point.

Recovery Update

I am currently on day 11 of my recovery. I am finally starting to feel better and not be in so much pain. I am sick of taking the pain medication. It makes my head feel so funny. The toughest part of this recovery hasn't been the pain, but not being able to pick up and snuggle Bella. She is mad at me right now. When I go in to her room to comfort her or rub her back, she shakes her head "no" and pushes my hands away and screams for her "dada" to come and rescue her from the big bad meanie mama.

I got to spend some time with just the older kids today. We took Luke to therapy and then I took Grace and Luke to the Dollar Tree (which is the coolest place to go when your a kid). Everything is a dollar!!! They each selected some toy that will no doubt be broken and or missing by tomorrow. Oh well. I love how excited they are to go to the Dollar Store.

I started another blog. This one is about Luke and the challenges he is facing. I started it because I need an outlet to process this crazy journey of ours and hopefully connect with other families that have similar stories. I also want to raise awareness of Luke and the disabilities that he faces and what help is available to us. You can link to it at the top of this blog...or go to www.luke-thislittlelightofmine.blogspot.com

Tourette's, Glaucoma and a Tonsillectomy

Life, as usual, has been busy. Although, I have been taking time to process the news of Luke's new diagnosis'. For whatever reason, I wasn't expecting a diagnosis of Tourette's the day we went to the pediatric neurologist. But there it was "Tourette Syndrome", seemingly thrown into my face quick and painful. The worst of the news was that there wasn't anything that they were going to do to help Luke (as the tics are not severe enough). The doctors words were, "you are just going to have to help him learn how to deal with it." "Deal with it"?!? My head has been swarming with all sorts of things, but most of my processing has been put on the back burner, as I had my tonsils burned out of my throat last Monday, in a process that has render me helpless and useless to my family, especially my 10 month old, who won't even let me rock her to sleep now.

The glaucoma diagnosis came 4 days after the Tourette diagnosis. His eye pressures are rising and he scored below average on his field vision test. Next appointment in 6 weeks, not 3 months. The new game plan is to treat with eye drops to lower the pressures. Luke HATES eye drops. Crying and pleading with me not to put drops in. How do you explain to your 7 year old that if you don't put the drops in that you may lose your eyesight? I tried to "ham it up" telling him that the eye drops were super secret special drops that gave him "super hero powers". He liked the pretending, but still screamed and protested when the time actually came for the drops to be inserted. Ugh...my heart breaks for him. School is difficult and kids are mean. Unfortunately he has a tic right now that cannot be hidden. He is being reevaluated for a new IEP through our school district. I am not certain what is going to come up but it will help me understand how to help him more effectively. I long for his little heart and soul to be protected.

Last Monday, I bid farewell to my tonsils, who I will not miss in the least. The procedure went well and was short. I was still extremely scared and cried in the operating room. I know, big baby I am. The recovery has been long and painful. The pain can radiate at different levels. At some points my throat has felt like shards of glass have cut it up. Fun. Not. I am on my second bottle of liquid Vicodin. The pain has been a little better today, but I am still in pain. The doctor said the back sides of my tonsils were covered with infection and puss. Nice. I guess that explains why I have been in so much pain off and on for the last six months.

Grace is doing well. My heart has hurt for her too as the place she holds in the family is one of the most difficult. I worry about her not getting enough or pushed aside because her needs are not as emergent as Luke's and the baby's. I have had some time to really think about things and there is one decision I must make for Grace so that I know that she is getting the best. She loves ballet and tap. She is practicing for a Showcase in the end of June. When I am completely healed I want to take her to see the movie Tangled.

Bella is mad at me because I haven't picked her up in a week. I would be mad if I were her too. Ugh..I just can't wait for all the craziness to subside and life to continue on. It also would be nice to eat something crunchy again. Just saying.