We got a smile!

We got what we have been waiting for...a smile! She started smiling last friday. She doesn't freely give out a smile it takes some work, but it's so sweet! We hope to catch one on camera so we can post it.

Going off the diet!

Chad and I made the decision to take Leah off the diet. Her blood work shows she still has high levels of calcium. When she has these high levels she goes lethargic and sleeps a lot. We were warned by her nutritionist that her body can't continue having these high levels. They keep adjusting the diet to help keep the level down but it continued to stay high. Well...we are at the end of the road, they can't make anymore adjustments. So through the next couple of weeks she will slowly be taking her off the diet. Through lots of prayer we really feel good about this decision. We truly know that the diet worked for Leah, it helped end those terrible months of seizure after seizure.

What's the next step for Leah? We feel that Leah needs the best nutrition. As her mom I would do anything for that little girl. So... I am going to try to nurse Leah again. When Leah was born she was a good nurser and continued to nurse very well until she got sick. When Leah got really sick in January I was devastated. I got so stressed I lost my milk. Well...after 6 months I am going to try to get it back. I have spoke to a lactation specialist and she said there's a good chance I can get it back. It will take a lot of dedication and hard work but it's worth a try. She said I have a lot of things going for me: I successfully nursed four kids and I abruptly stopped nursing because of stress and didn't wean her. I am taking lots of herbs and pumping a lot. Wish me luck...I need it!!!

Tonic seizure/Bladder infection

Well...Leah unfortunately had a tonic seizure last Monday night. It made for some sad anxious parents! I cried myself to sleep that night. I honestly don't know how I made it through the days she had ten seizures a day. The doctors warned us that Leah could continue having seizures when she gets sick or has a fever. The next morning Leah had a high fever and cried a lot, I knew something was wrong. We took her to the doctor the next day and found out she has a bladder infection. Poor baby! Today, she is doing much better thanks to some good antibiotics.

Tests results!

After waiting three long months we finally got Leah's tests results back for genetic and metabolic diseases. They came back normal...what a relief! Leah's doctor said "How are you doing with those results" I told her I am so relieved. She said those are all the tests we can do... it must be hard to not have any answers. Not having answers is the worst torture! But to know that she doesn't have a life threatening/ life altering disease makes me feel that we can fight this and that she does have a chance at a great life. Having those test results come back clear means that maybe she can outgrow this one day.

Vitamin B12 shots...Ouch!

We saw Dr. Humpherys Monday.  It was a good visit. He was able to review her medical records and found some lab work that was done when Leah was two months old in which she had a lot of high acid levels in her body, the doctor up at Primary's disregarded the high numbers. Dr. Humpherys feels those numbers shouldn't have been disregarded. He is now starting Leah on folonic acid for four weeks then adding vitamin B12 shots. We will give her the shots every three days. I have never given anyone a shot! Luckily it goes in her bum and she won't see who gives her the shot! He said if this is the right thing for her we should start to see her motor skills greatly improve. He is very confident in the treatment but says if this one doesn't work he will move to a vitamin B6 treatment and after that maybe pressure chamber.

Unfortunately Leah has continued vomiting. Chad and I figured out why Leah is vomiting, it's the protein powder that was added to her diet two weeks ago. The protein powder is milk based and she is sensitive to milk. She needs soy based. So today we started soy protein powder. Cross our fingers it works well with her system. Paula, her nutritionist wants Leah to get blood drawn again next week to see if her calcium levels have improved. Paula said if they haven't then Leah will probably have to be weaned off the diet soon. This really scares us! But, we have full confidence in Dr. Humpherys to take care of Leah from that point.

Therapy was great yesterday. They assessed Leah and she is considered a 1-2 month old with some 3-6 month behavior. Her therapist haven't seen her in two weeks and they were thrilled with her progression. They have full confidence in Leah's recovery! We are in the process of trying to get some private physical therapy for her. We just have to do as much as possible for her!

Leah has some awesome break through moments. We see her in there when we have these experiences. They are not everyday but we are seeing them more and more. We hope it continues.

A little scare!

Last weekend Leah was really sick, she was vomiting and had diarrhea. One night when I went to check on her in bed she had thrown up and wasn't responding. I called for Chad and he tried to get her to respond...nothing. We called 911 and just before they got here she started to respond. When they put oxygen on her she then began to come out of it and started to cry. Her vitals were fine and she started to act herself soon after. We don't know what happened, maybe a seizure...maybe not. She didn't act like it was a seizure she acted more like she was in shock! She scared us so bad. How many lives does this little girl have? She is so strong!

This past week she has moved her head more and is moving her arms with full extension. Her hand eye coordination is improving. She is starting to touch toys, bring her hands to her face and bring her hands together. Her head control has really improved, thanks to lots of tummy time! Now I just have to get her to the point that she doesn't scream bloody murder when I put her on her tummy. She also is trying to hold the bottle when we feed her. She is continually showing more emotions, we are finally starting to understand her cries. Since we have seen more emotions recently we hope this leads to a smile one day. We can't wait for that day, we talk about it all the time.

The brain really takes a long time to recover. A nurse that Chad works with really helps us put things in prospective. She was in an accident and got brain damage. It took her a year to learn to walk again and now she runs a doctors office. She tells Chad to be patient and never give up. She gave us the book "The Secret". If you haven't read it I highly recommend it. She gave it to us at a time when we really needed it, it helped me so much.

She continues to have high calcium. They changed her diet again, they got rid of RCF, which is a soy formula that gives her too much calcium. They also added more protein, more carbs and more water. They want her to gain more weight. She is on a 2.25 ratio instead of 2.50 because her seizures have been under control.

We look forward to seeing Dr. Humpherys tomorrow. We can't wait for him to see her improvements!