EEG results, more testing.

Leah went to Dr. Longo last week (metabolic/genetic doctor). He said Leah is a rare case and a mystery. He said almost all genetic tests have already been ran. He wants Leah checked back into the hospital to run a few more tests. He says there's one syndrome that is lining up that Leah could have. If it is this syndrome then the outcome isn't good, but we don't go down that path until we have to. We have been worried about her having a genetic disease that could be pass down. He confirmed to us that Leah doesn't have any genetic diseases that was a cause of bad gene's in the family and that nothing will be passed down. Whatever Leah might have is a result of her own body.

She also went to Dr. Inman, an immunologist. She is also going to be running some tests. Leah also went to Dr. Young (eye doctor), her eyes look great. Some good news!

Leah's EEG was not good. She is having multiple seizures in the right frontal lobe of her brain that can only be seen on an EEG. She was started on seizure medication right away, she is actually doing very well on this medication.

Our emotions get going again when we have all these doctor appointments.  We really would love for a doctor to just say "Leah has this condition and here is a medication to treat it" and bam Leah comes back to us and life continues. Not reality right? I think it's okay to dream sometimes. Man...I really miss that little girl!

She did have a day of lots of smiles last week. God knew we needed it!

Heaven sent!

These pictures were taken the morning after Leah was born. I was exhausted after having her so I didn't look my best at all. But this photographer captured such precious moments. When the photographer was finished she came back later that day with a slide show of all the pictures done with music. I (of coarse) balled my eyes out and said I would take it all. They really know how to get us moms. My bill was very expensive but worth it all. I am so grateful I got every picture because I unfortunately don't have a lot of pictures of Leah before she got sick so to me these pictures were heaven sent!

Move forward!

Moving forward is one thing I've learned his year. I had a conversation with my eleven year old daughter Lauryn yesterday. She was upset because her book report was due the next day and she had only read half of the book and needed to read over 70 pages and write an essay about the book. I'm sure this has happened to many of you and your children (we all have done it right?). She wished she had read more each night through out the month. We all have so many things that we wish we would've done in the past. I told her the most important thing is to learn from it, move on and don't look back. Dwelling on the past is no good, learning and moving forward is all we got to do.

Therapy is over...for now.

Leah's "Now I can" therapy is over. The four weeks went by so fast. It was an amazing experience. Leah's body now has good structure (she's not a wet noodle anymore). She can hold her head up for about 10 seconds, she is doing awesome. She worked hard every single day.  The therapist taught me and Chad some therapy to keep up with her. It was a little hard to get the positioning done right but now I'm doing better and soon I'll be a pro. We learned SO much there and we are so excited about the future. Before this session of therapy I was so sad I didn't know how to help Leah progress and now I feel so powerful, like I can do anything to help her. The therapist there are amazing. They give us so much hope! I want to thank our wonderful parents and my sister who helped us take Leah to therapy we could not of done it without each of you. We love you guys! We will be continuing therapy at home with her until next March. That's when we will start another session.

Ty & Leah

It's Ty's 4th birthday today! I wanted to share a little about Ty & Leah. Tyler is quite the little boy, as many of you know. He is FULL of personality!!! He is very big for his age, he has been off the charts since he was four months old. This kid has a huge butt and major thunder thighs (football material). He is a natural athlete. He is mister social, the king of the crowd!!! He is always happy and makes everyone laugh. We couldn't imagine our life without him. I know Tyler was suppose to be in our family to help Leah. He protects this little girl like you wouldn't believe. He is so rough and tough but when it comes to Leah he is so loving and gentle. He loves this little girl. He kisses and hugs her all day. Whatever happens to Leah in the future she has a big brother to protect and love her! We love you Ty Ty!!!

Fevers???

Each time Leah has a tooth come in or gets sick she fevers for four weeks. Why? Is the BIG question right now. She just ended a four week fever cycle and of coarse she seized for four weeks (It was a molar this time). The fever ended last Friday and therefore her seizures also ended. Again, she only seizes when she has a fever. We spoke again with our neurologist and he says that medication usually doesn't work with febrile seizures (which we pretty much knew). He wants another MRI (probably not until she's 18 months, it will show more than) and another EEG (that will be scheduled ASAP).

These cycles are stressful and really wear on Leah's body... So we are investigating why. We have spent many hours researching, talking with doctors etc. Now we are looking into immunology, we are wondering if she has an autoimmune disorder. Dr. Hornyik is talking with some immunologist and trying to get us in. We have an appointment in December but earlier would be better.

Seriously...my stress level is through the roof. I am trying to figure out my baby's condition, raise three other kids, work and build a house. Playing the balancing act is hard. I'm trying to be a good wife and mom but my emotions are all over the place. I'm just taking each day at a time, that's all I can do!