Sunday, February 22, 2009

Gentle, Gentle....

As most of you know, being a parent is very challenging....I wouldn't change it for the world though! Mylee has become quite the big helper... She loves to help mommmy feed Khloe (the times we feed her breastmilk from a bottle). She tries to help mommy place Khloe's blanket back on her and sometimes slipping because her feet don't quite stay in one place...ending in her tumbling to the floor and on the way down accidentally clobbering her little sister. It happened again this morning...poor baby Khloe she started to cry. Mylee of course is right back up wanting to give her baby sister a wonderful kiss. I believe these two are going to best friends. Mylee absolutely adores her little sister.
I am excited to announce that we have seen some progression in Mylee's development. I am convinced it is due to the arrival of Khloe... I should be more positive and say it is because of the hard work Dave and I put into each day with her. I guess that could be a little bit of it. And I definitly need to give credit to her therapist and now her nurse Shannon too. Mylee is still receiving therapies almost on a daily basis. Mylee has started to take a couple of steps at physical therapy, she is still very unbalanced and very ataxic...two steps is TWO STEPS!! She also has started to put together two signs (mommy and daddy are learning more sign language too)! Pending the status of her procedure tomorrow, her speech therapist is considering fitting her with a computer that would help her communicate even more!
Oh for those of you who don't know, when Mylee first met Khloe in the hospital she surprised us all with saying, "I WANT MY MOMMY!" Mind you she had not seen her mommy for a whole day...I think all the excitement and the fact that a new little person had arrived really got those brain signals working....we haven 't heard it since, but we are optomisitic that her words there waiting to come out!
Mylee's procedure is scheduled for 10am tomorrow morning at Children's hospital. This will be another outpatient surgery. I am not looking forward to having her put to sleep again but very anxious to see what her pulmonolgist and ENT find. Her ENT from her surgery last month diagnosed her with bilateral vocal cord paralysis. I think we are all a little confused as to why we hear sound coming from her mouth though. They will need to take a closer look at those vocal cords to make sure they are really dealing with the paralysis. We have been told about a couple of procedures that can help fix the issue, but of course it brings new risks to Mylee. Some being very risky to her airway in which could result in her being trached for period of time. I am not sure we are ready for something like that. We know it could eventually be her fate, but we are still not ready. So, the game plan is to take a look again. Both her pulmonologist and ENT along with both Mylee's speech pathologist will be there!
We have a transition meeting set up for May 14th with our local school district. Mylee will start developmental preschool in August when the school year starts. I will know more in May if Mylee will need to be fitted for a wheelchair for school or not. I will be talking to her pediatrician at Khloe's next appointment for a temporary handicap tag for parking until we know for sure if she will need a wheelchair. We will then ask for handicap plates. It is so interesting how our lives evolve the way they do. I never thought in my wildest dreams that I would have a disabled child. And even when I write these words, it still sounds strange.

We still try to manage to have a normal life too. In fact we are anxious for Khloe to get her first set of immunization shots so that we can go play down in Mexico. I think our first trip will be without the dogs.


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