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.


Sunday, February 8, 2009

Family of Four!

Our life is constantly evolving and changing right before our eyes... I never thought my heart could hold so much love and now it is overflowing with emotions that I couldn't possibly explain with words! I might be a little bias, but I have the most beautiful family!! I am loving it!! Please meet our newest addition, Little miss Khloe Elizabeth...

I have to confess though...I miss being pregnant! I never thought in my wildest dreams that I would have this emotion of sadness...I touch my tummy that is shrinking before my eyes and feel an almost empty feeling. I miss the kicking, the hiccups I felt daily, and the sudtle swishing motion that would wake me up at 4am! Don't get me wrong, I love my little one and the bond that we have already established! Khloe loves to snuggle in bed with me in the early morning hours or during the day when mommy needs to nap. We cannot get into this habit though, so we only snuggle for short periods of time.

Mylee is the best big sister...she loves to give baby Khloe kisses. It is funny though, she wants to hold her but once we have Khloe in her arms she is pushing her away. I think at this point it is a love/dislike relationship. Overall though, I think she loves her the most! This is going to be a fun sister bond to watch evolve overtime. I know the two of them are really going to teach each other so much!

We have had a very busy last week or so...Khloe's arrival seems like it was yesterday (She arrived at 07:56 am on January 28th, weighing 7lbs 5 ounces and 20 inches long)...and know that I think about it she is already 10 days old. Amazing how time flies!! We had a slight bump in the road on day 2 with her, it was the first visit with her pediatrician....he continued to listen to her chest and looked up at me with a look of concern...he told us that he heard what sounded like a heart murmur...he immediately told us that he didn't think it was going to be too much of a concern (Thank goodness)...he was going to see her first thing the next morning and if he continued to hear the murmur he would be referring us to a cardiologist. Long story short, Khloe had an echocardiogram and the results are pretty good. She does in fact have a ventricular septum defect (hole in heart), however the hole is small and away from the aorta valve. It will be monitored monthly. We have an appointment next month for a follow up and another EKG. Her cardiologist however does believe the hole will close on its own! We are so thankful to have a happy healthy baby girl!

We have kept Mylee on her normal day to day schedule. We figured this is probably the best way to keep her happy and not get so jealous. Daddy took her to therapy sessions...Nana and Papa took her for walks daily and to the park as often as possible. And Nana Pat had fun playing with her in her play room. We have also had a playdate with Mylee's friends to keep her busy! This week daddy, Grandma and Grandpa Eaton will hopefully take her to the zoo and to the Children's museum in Phoenix - Pending weather. Mylee also has her usual therapy will be very busy!

Speaking of therapy, Mylee's speech pathologist mentioned to Dave that pending the outcome of her procedure that will take place on February 23rd, she is considering have a script written for Mylee to use a computer that will help her communicate better with us. The next procedure for Mylee will sort of be exploritory. Her pulmonolgist along with her ENT and both speech language pathologist will take a look at her vocal cords to determine and confirm whether or not she has bilateral of unilateral vocal cord paralysis. We are hopeful it is only unilateral. We are wanting to be able to make some corrections in this area in order for her to live a so called normal life. If the results come back that in fact she has bilateral vocal cord paralysis, we may have to put any corrections on the back burner for now. Therefore, she would continue on her feeding tube for an indefinite period of time. We remain hopeful!! NEVER GIVE UP!!

Mommy and daddy are doing pretty well considering we have started to become sleep deprived...We will post again soon.