Our updates

Lydia is still doing well...happy and so easy-going! She had PT with Susan this morning, but I missed most of it because I was with Elise and her OT, Laura. Since it was the first time she has seen Elise in a while, I wanted to catch up with her and let her do an evaluation for Elise to assess her skills. It went great! I told her of the things that have made us most proud in the last couple of days. Yesterday, Elise got into her car seat and actually buckled 2 of the three buckles all by herself...that is really big!! We were so proud of her, but probably not quite as proud as she was of herself...she was grinning ear to ear! Then, this morning...she was playing in Lydia's room (still in her PJ's) so I threw her dress to her and said, "Take off your pj's and put on your "day-dress'." We do this fairly often, and she usually tries for a minute, then gets distracted...and we usually come in and help her to get dressed. Well, today...when I threw her the dress, I went back into the living room to feed Lydia. Elise, all by herself!, took off her pj shirt and shorts...walked into her room and put them in the hamper...walked back into Lydia's room and put on her dress...she, of course, came strutting into the living room to show off what she had done...with such a look of accomplishment. Audrey and I raved and cheered at what she had done! Then, I told her to go to put her sandals on. So, she went to the shoe closet....took out her sandals...brought them to the living room and put them on all by herself! I felt like she had grown up over night! She has been practicing dressing herself and putting on shoes for a few months now, but she has not been this consistent...it is exciting!

We also started a new technique with Elise today to try to desensitize her. Elise has some minor tactile sensory issues...she does not like playdough or sand or anything that feels different to her. She is getting better with dirt and grass...and we have gotten her to put play-forks and knives into playdough, but she refuses to touch it with her hands. The new technique is called brushing. Laura gave us a plastic brush with plastic bristles...we have to brush her arms and legs (including hands and feet) and her back with the brush every two hours while she is awake. Each time, we also have to stretch her joints. The process should take about 2 minutes each time. Elise was not sure about it at all when Laura did it at therapy today, but when we did it at home, she was much more accepting. Please pray that her willingness continues. The entire treatment is 2 weeks of the brushing every 2 hours.

Audrey's swim lessons continue to go well. She went under water the last two sessions!! Yeah Audrey!!! I am anxious to bring her tomorrow so that I can see for myself. She also went to gymnastics this evening...she did great! I think she is really good at it...she is a strong little cutie! She was hanging from one of the uneven bars....and moved herself all the way to the other side of it...I am amazed by her arm strength. The lady asked a couple of weeks ago if we wanted to let Elise try it out...I wasn't sure she was ready, but after I thought about it, I thought she might be able to do some of the things...and it would be great practice/therapy for her...so, I asked her today if she wanted to go to gymnastics with Audrey...she gave a definite "No!" Audrey started crying because she really wanted her to do it....but, that didn't convince her...not even a little bit...she was still a solid, "No!" I asked her again while we were watching Audrey, but she was not budging on her decision. We are definitely not going to force her to do it..but, maybe she'll change her mind once she gets a little more confidence.

Our latest great news for our family, financially...Lydia and Elise have both been approved for Medicaid coverage. That means doctor visits, prescriptions, therapy, medical transportation, etc. This is HUGE for our finances! The only disappointing factor is that Neurotherapy (our PT and OT's) do not accept Medicaid payments. There are other facilities that do accept it...so that brings with it another decision to be made...do we continue to pay for the excellent service we are getting- or do we attempt to get a referral for somewhere new??? Just when I think I've waded through the wave of decisions...here comes another to be made! I need guidance and I pray that God will lead me to decide what is best for Lydia and Elise and our entire family.

We are closing in on 11 weeks since Lydia's biopsy...it seems that the closer we get to a diagnosis, the more it is on my mind. The more I try not to think about it, the more I think about it. Now, I'm starting to think, "What if we don't get a diagnosis? What if they say...yes, we think it is mitochondrial, but we couldn't pin-point a specific disorder...?" I don't know how I would feel about that. I like the idea of having a diagnosis because it means that we'll have some idea of what to expect or what things to look for that we may not already know...but, Dr Hollman always says that 'no diagnosis' is better- because (as she puts it) every diagnosis in neurology is bad. Obviously, I am over-analyzing the situation...which will not help anything. I've been trying to tell myself lately, "Mandy, give your worries to God." I know that He can handle them much better than I can...and He will carry me through, over, under, around any worry that places itself in my path. There are no worries where there is God! I just have to let my heart speak to my head.

Thank you for your continued prayers.