Fall Fun 2011

Hello everyone, I know it's been awhile so here goes some new things going on at the Smith household. Maddie has started with a new Physical Therapist and she is great and high speed. Maddie is sitting up on her knees now and playing some, of course with someone standing by for when she gets tired. We are working on her standing and getting the walking movement started because she will get her gate trainer/walker soon...yay!! She is doing better with her seizure activity. She is still having head drops but they are not anything like the seizures she was having. These are much less intense but we are still praying that all of this seizure activity stops soon. Maddie is progressing slowly but surely. She still isn't talking but she communicates in her own way when she smiles at me while we are playing. She is eating baby food better now, so thats awesome, and she will now drink more juice. Over all everything is good and we are just blessed to have such a sweet precious baby girl. I love this time of year so we are doing more things outside to get out of the house and get some fresh air. Maddie just had her first trip to the beach recently and loved it. It was a much needed vacation for Jason and myself as well. Anyway that's all for now. I will post more soon. Thank you all for your continued thoughts and prayers. :-)

Maddie, Haley and Hayden being silly

Her new Jam Jams(pj's) that the sweet ladies at granddaddys work got her

Maddie riding a pony for the first time

Maddie playing with her new ball!

Maddie's EEG June 2011

Maddie riding in a wagon at Children's Hospital, Birmingham AL

Maddie's EEG in June 2011, she was not happy

Every day is a blessing

Maddie is doing so much better now. Her seizures have gone to what we call drop attacks, she drops her head quickly and looses her balance but even these are fading away day by day. God is Great!! She is progressing more every day and we are so very proud of her. She is so strong and such a motivation to me and anyone that meets her. She is eating food with a spoon three times a day, and drinking lots of juice. We are still working on getting her to drink plain water, and believe you me she knows the difference, smart girl. She now holds her arms up to be picked up and of course it works 'cause she is so cute and I can't resist, ha ha what can I say, I know she is spoiled. I waited a long time for her to use those arms and reach for me and it warms my heart every time she does. She is learning how to hold her bottle (which is a HUGE milestone) and I am tickled with joy. We are in the process of getting her a gate trainer, which will teach her to walk, but as for now we are just taking things day by day, one blessing at a time. She smiles all the time and is just the best baby, she is such a joy and I truly am blessed to be at home with her, she is my little companion, and I wouldn't have it any other way. Anyway, that's all for now, enjoy the photos below of some of her recent milestones. Thank you all for your thoughts and prayers! :-)

Learning to hold her bottle..YEAH MADDIE!!

Eating Danino yogurt (Strawberry/Banana)..yummy

Holding her Elmo, she is playing with toys more

Reaching for Daddy to pick up!

Just being cute

Maddie and our cat Marvin, she pets him and jabbers at him, he is a good therapy tool for her.

Where hope grows, Miracles will blossom!

Hello everyone, above is a video we recorded tonight of my sweet baby Maddie playing her keyboard. She is progressing more and more each day, and this was so awesome and I am so proud of her we wanted to share our joy with everyone else. She is having what we call head drops daily and we have no clue as to what may be causing these episodes or if they are anything to be concerned about. She recently had an 48 hour EEG that we hope will tell us if they are seizures or if they are even neurological. I will update as soon as we know something but I had to share this awesome video. Maddie is more alert, more playful and just generally happier since we have her off of Depakote, it may work for some, but is wasn't the medicine for her. Thank you all for your thoughts and prayers, we love you and God bless!

Today is a new path of Hope and Faith

"Dream as if you'll live forever, live as if you'll die tomorrow."

Hello everyone, I know it's been awhile but we have had a rocky couple of weeks. We got Maddie's MRI back and her Neurologist said that her brain had shrank since the MRI last year. So I asked him if that could be from the medication, oh of coarse not he said, (cause they are getting paid to push these meds), but from the research I have done it very well could be the cause. Anyway, we got her off that cercain medication and she has had a few day of withdrawals from it. Monday was the worst of it, she was restless, irritable, and all I could do was hold my sweet baby while she cried out and I just cried with her. Now, good news, she is a different baby without that medicine. She is smiling all the time, trying to talk, using her hands, kicking her legs and MAY take one nap during the day compared to sleeping all day. I am so excited and soo very proud of her. She is eating now without choaking, she is eating stage 3 foods without any problem, she is a different baby. I think it helped to get her off of those meds but all the prayers is what brought us to this point today. God is wonderful and HE has a plan for each and every one of us. She is starting to roll over now, and we are working on crawling. Thank you ALL for your love and support.

Maddie and her seizure monster

Well the last couple of days have not been very good here for my sweet Maddie, she had 3 seizure episodes yesterday (Tuesday) and 3 episodes today. However, she is a tough cookie and she fights through the episodes and continues to play and look at me with those big beautiful blue eyes and wonderful smile. I called her Neurologist and he increased her Keppra and put her on another Medication for the next three days. She is cutting her last four back teeth so he said the pain from that could be causing the increase in seizures, but we still are not sure what causes them, and may never know. Maddie has a MRI Saturday at Children's Hospital and maybe we will get some answers from that as to how quickly her brain is developing. Please help us pray that we can control her seizures and that they will stop on their own with time. The scared look in her eyes when she is having a seizure absolutely tears my heart apart because I can not stop them or take them upon myself. Please also pray for her for Saturday, she has to get anesthesia for the MRI and that always scares me. I will update with the MRI results as soon as I get them. Thank you all so much for your thoughts and prayers!

My precious baby is growing up

Hello everyone, I know it has been a little while since I updated this blog but in the wake of our state's most recent catastropy, the April's Fury tornadoes on April 27th, 2011, we have been trying to help in any way possible trying to help those in need. Please continue to pray for those families that lost their homes, their loved ones, their jobs, and any that were affected by this storm in any way possible. We are a strong state and we will pull together and help one another. There are alot of people working round the clock gathering supplies, removing debris, transporing supplies, and just trying to house the thousands that are homeless right now. Anyway, back to Maddie, she has been doing GREAT. Seizures are down to one every week if that and they are very lite not even lasting 5 minutes. I pray that they will stop completely soon as she gets older but we are blessed to have them somewhat under control. She is playing with toys now a little, just rubbing the toys and slapping them (its a start, i'm tickled), she sits up great on her knees and can play for about a minute at a time before she needs a break. She is eating so much better and is closing her mouth now when she eats which is awesome. She is cutting her last 4 teeth, then she will have a mouth full. This month we are starting water therapy in my mothers pool and at our local YMCA which I think will be great therapy for her, she loves splashing in the water. Thats about it for now, she is just progressing everyday and I am so very proud of her.

April 23, 2011 Maddie's Birthday Party at Mimi and Papaw's House

Today was Maddie's birthday party at Mimi and Papaw's house (Jason's parents). She has not had any seizure activity since April 20th, 2011 which was the actual day she turned 2, and it was a very lite seizure lasting less than 2 minutes with only a couple of head jerks. We are so very proud of her and she is progressing some everyday. We are now working on holding a sippy cup, which is going to take some work with her low muscle tone and getting her to hold it steady but we have to start somewhere. She is also sitting up so much better and has alot more trunk control, now she just has to learn to balance herself. She has slept alot today which I think has alot to do with her medicine but we still all had a great time. We are so blessed to have the support and love we do from our family and friends, and I don't know where we would be today without you yall. Mimi and Aunt Amy put together the cutest party with a farm animal theme which was adorable. We love you ALL so much and thank you ALL for everything. God bless you all and I hope you have a happy Easter!!

Maddie and the Easter bunny 4-20-11

HAPPY BIRTHDAY MADDIE GRACE!!

Today my sweet baby girl turns 2 years old. She has been though soo much in the past two years and yet she is still such a sweet happy angel. Mommy and daddy love you soo much baby and we are soo very proud of you. I don't know what I did before you but you make our lives whole. You are my heart and I love you soo much baby. HAPPY HAPPY BIRTHDAY MY SWEET BABY, WE LOVE YOU!!!
Below is Maddie on day of birth, 1 year birthday and 2nd birthday.

Maddie 2nd Birthday

Maddie's First birthday party

April 19th, 2011

Well, today has been a great day, Maddie has been babbling and playing like normal. Her birthday is tomorrow, I can't believe she is already two years old, oh how time flies. The last two years of our lives have been full of tears, stress, worry no doubt, but above all that we have had the joy of her smile, the sweet touch of her little fingers holding mine, her snuggled up on my shoulder, and her big beautiful blue eyes. I am so blessed and I can not even begin to tell you how much I love her. We have the best family that has been so supportive, and the best friends who are always there with a shoulder to cry on or arms wide open for a hug. We love you all and thank you so much.

Maddie's Story

My name is Becky and my daughter Madilyn Grace was diagnosed with Infantile Spasms when she was 8 months old. She will be 2 years old this Wednesday April 20th, 2011 and we are still trying to get them under control. She only has maybe one every week and a half or so but we are hoping they will stop completeing with age. She is currenting taking Depakote and Keppra to control them which seems to work for the most part. She is severly developmentally delayed becuase of the seizures but she also has low muscle which doesn't help. We work with her daily and she is progresing slowly but surely. She is my world and I am so blessed to have my sweet baby girl. She is a very happy baby and is very calm and content. Please pray with us that they soon find a cure for epilepsy and help spread the word for awareness.