Sunday, June 30, 2013

Life goes on...

Summer started and life got very busy! I try and give each one of my kids my 100%. We go go go all day. Life doesn't stop even with a special needs child. We include her in everything we do. I think she has enjoyed all of our little daily adventures. The only issue we have is that the Utah summer heat has hit and Leah's body over heats. We have to be very careful with having her out in heat for long periods of time. We kept Leah home all winter and now she is seeing life outside our home. It's a lot of work taking her out. I rely on my kids help and they never let me down I am so proud of them. One of Leah's first outings was the swimming pool at our neighborhood rec center. I will never forget this day. My kids were off playing in the water and I was sitting on a bench taking care of Leah. I could feel all the eyes of children and mom's staring at me and Leah. I knew they were just curious about Leah. I had a very hard time with this first experience of having Leah out in the public eye. I was very uncomfortable with people staring at us. I actually cried that night when I put my kids to bed. I am now used to people staring at us. I just smile at them. I am so proud to carry around my Leah in public. The best thing others can do for me is to just simply give us a big smile. It would make my day!

Life goes on with Leah! The last post we had started seeing progression with Leah by giving her the amino acid serine. Unfortunately the progression came to a halt. It lasted about four weeks, then one day it all stopped and she went back to where she was before giving her serine. It was sad! We emailed Dr. Longo. He doesn't have any answers right now or another path to go down...very frustrating for us. We told him we wanted to go back to giving her vitamin B12 shots. He said that was okay. We also got more folonic acid to give her with her shots. This combo was a key to Leah coming back to us last summer. Hopefully we can see some results!

We want more opinions for Leah's condition. We decided we are going to take a small trip up to Helena, Montana to see a Pediatric Geneticist. One of Chad's doctor friends is good friends with this Geneticist and has encouraged us to have him see Leah. He said people come from all over to see this guy. We are in the process of getting all her records from her Pediatrician and all her doctors from PCMC. We hope to see him in August.

Leah continues to vomit daily. It's getting old very fast. I guess there's a connection with neurological problems and vomiting, she usually vomits after a bad seizure. We took Leah to see her gastro doctor about this and he suggested we put her on Erythromycin . We give her small doses a half an hour before each feeding. This helps speed up the stomach to digest food faster. In small doses Erythromycin doesn't act as an antibiotic, I was very worried about that. I didn't want Leah to be on an antibiotic daily. So far, it's worked okay. She still throws up almost daily but the volume has decreased. Sorry if that's gross! Dr. Jackson saw that her weight has plateaued because of the vomiting. He now wants her intake to be 1200 calories.

I meet with a nutritionist this past week and we are finally starting the blended diet for Leah. I didn't want to start the diet until we officially met with a nutritionist and Leah was being closely watched. Leah is fragile and very under weight so I didn't feel comfortable starting the diet on my own. She needs to be monitored very close by a professional. We came up with a plan and here we go. We will be starting her slow. She receives four meals a day of formula by a pump. She will now get four feeding a day by bolus (meaning I will be slowly pushing the food through a syringe into her feeding tube). This will take time at first. But our hopes is that her stomach will get stronger and she can handle the food at a faster rate. It might take 20 mins at first then hopefully we can get to 5 minutes per feeding one day. She will be getting REAL food. This is an example of a recipe:

1/2 cup cooked barley
1 1/2 c cooked carrots
1 cup pears
3 oz chicken
2 c whole milk
4 Tbsp olive oil

Blended up in my awesome blendtec blender. It purees it so smooth so I can push it through her feeding tube. I am so thrilled to give my child real food. I was not about to have my daughter go through life living on formula. It feels so good to do this for Leah. Lauryn said "Mom I love that Leah gets food now it helps me feel like she's normal".

Leah is now wearing braces on her hands. Because of her neurological problems she always has her hands in a tight fist. Well, her thumbs are now becoming deformed. She wears these braces to keep her thumbs out. She really wines when I put them on, she really hates them. It probably hurts her when I first put them on and then she adjusts.

I would never make it without her therapist's. I truly rely on them to help me care for Leah. They are so wonderful! I have grown so close to Becca, her occupational therapist. Sandra is her eye therapist and Susan is her physical therapist. I love them all! The best part is they love Leah so much and they take such great care of her.

I am doing really well these past few months. I am adjusting to this new life of caring for a special needs child. It took me over a year to get to this point but that's okay. I needed time to mourn and time to adjust. Having a diagnosis has helped this process. This is what Leah's life is meant to be and I accept it. The best thing I did for myself was to let it all go! I trust God! I gave him all my pain and humbled myself. I am not in control He is. When I learned to let go and let him be in control I became a new person. A happy person! I am myself again, I joke around and laugh again. I accept my new life. I love my new life. I love who I am because of this little girl. I am strong and humble and happy. I live a very simple life now. The little things don't matter anymore. I have learned a great deal about life these past couple years. I truly live everyday to it's fullest! The little things in life are the greatest things. I thank God everyday for this new view of life!

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