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.

xoxox

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 sessions....it 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.

xoxox

Go Cardinals!

We have had an amazing last couple of weeks with our special little princess! We had a lot of fun last night painting my tummy and letting Mylee paint freely with washable paints. We always have to keep an eye on her though because she thinks everything goes into the mouth! Speaking of mouth, I made an appointment for her today to see the dentist for the first time. This is a special needs dentist and amazingly it is close to our home! It will be interesting to see how she does.....stay tuned!



The weekend before last we celebrated the win of the Arizona Cardinals as they became the NFC Champions and will be heading to the Superbowl! We are so proud of them!! We enjoyed staying home just the three of us (well 3 1/2 of us). We got a little goofy with the camera, but it was fun anyway!!



Our bags are packed...Mylee will stay at the Benjamin's tonight and Khloe will be born first thing in the morning!! We are all very excited! This post will be sort and sweet. I am hoping the pictures tell it all! We will post again real soon!!


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Photo and video editing at www.OneTrueMedia.com

xoxox

Time flies.....

So much has happened in the past couple of weeks. Mylee is remarkable and did just fine through her surgery and recovery! We have a new possible diagnosis that goes along with her severe dysphagia. Her ENT believes she has what is called bilateral vocal cord paralysis. He told us he did see them move slightly but that they did not come together as they should when any foreign object gets into that area. Hence the reason she continues to aspirate.

So, the game plan at this moment is for her ENT, Pulmonologist and both speech pathologist that she sees will be conducting another surgery (more like procedure) called something like a video fluoroscopy. I think I have the wrong spelling, but basically they will be looking at her vocal cords more closely. She will have to be under general anaesthesia again, but will be able to be breathing on her own. This will allow for them to look at the cords in order to see them move more freely. We hope that we have a better understanding once we have this procedure completed.

Mylee's ENT was a little apprehensive to go forward with an immediate fix for this problem. And we appreciate his conservative approach! Their are a couple of options that was discussed with us. The first one being a procedure called a gel or foam injection. This material is similiar to botox and would be injected into the cords. However, this risk is that it could potentially cause airway obstruction therefore compromising her airway. She would then need a possible trach in order to breathe. The other procedure is called thyroplasty (permanent solution) and again the risk would be airway obstruction.

Although we are excited that we have some new information about what is causing some of the reasoning behind her dysphagia we are very concerned and need all of your prayers for guidance in order to make the correct decision going forward. We will be anxiuos to know what is found with the upcoming video fluoroscopy. We do not have this scheduled yet because we are waiting on the arrival of baby Khloe. Once we have more information we will post.

Go Arizona Cardinals!! We will be home from the hospital with our new addition just before Superbowl Sunday. We will hopefully have new pictures of the baby and big sister Mylee!

xoxoxo

New Surgery

Mylee is scheduled for surgery early tomorrow morning. We will head to Children's hospital before sunrise in order to be there at 6am. Surgery is scheduled for 8am. Dr. R will place tubes in her ears and remove both her adnoids and tonsils. We are hopeful this will help with her speech and help control her sleep apnea. He is also wanting to look at her vocal cords to see if for some reason this could be causing her to aspirate. It is slim chance, but we are willing to have any and every doctor look to see if they can find the cause. If he does find an anomally, he has a procedure that he will perform on her. It is sort of like injecting botox into the skin, different material that he will inject into the area that is causing a gap at the vocal cord site. He did say it is a risky procedure, but that he feels it is necessary if this is what is causing her aspiration. We will be requesting constant updates before anything is performed during the surgery. I also have the films from when she had her last bronchoscopy that shows the vocal cords, so I will be asking for him to show us films of the site before he injects anything.

Mylee is our little warrior princess and we know she will pull through this surgery just like she has in the past. We are hopeful we will only be in the hospital until Friday, I will be sure to post updates as soon as I can.

We also had a little bit of a scare last Sunday morning. I started contracting around 4am, I monitored them in my head but started to worry because they seemed to get closer and closer together. I woke Dave up and had him start timing them, sure enough they were about 5 minutes apart. We called the doctor and she wanted us at the hospital for additional monitoring. The contractions ended up being irregular and timed between 4 and 6 minutes apart. I was given medication to stop the contractions and will be on them for the remainder of the pregnancy. We are 34 weeks today. Due to my placenta previa, Khloe Elizabeth will join our family on January 28th....the countdown begins!

xoxox

Christmas 2008

Wow, another year comes to an end....Our 2008 year has been very challenging, but I believe has made a us a stronger family! Mylee continues to amaze us each waking moment. We have spent the past few days together as a family of three (almost four) and created memories we will cherish forever!

Mylee loved visiting with her Uncle Nicky, Aunt Sally and Grandma Trudy on Christmas Eve. We always have uncle Nicky over on Thursday nights and since Xmas landed on Thursday this year we decided to have him over on Wednesday. Mylee loves her Uncle Nicky.....We read her her Christmas story books and she was fast asleep by 8:30pm.....

Mylee slept in Christmas morning and awoke by 8am, she was bright eyed and bushy tailed and very excited to see what Santa had brought her....Mommy helped her with assistance walking down the hallway to see what had been left in front of the Christmas tree for her. Her favorite item this year is her baby doll changing station. She enjoyed playing with all the great gifts she received...she even like playing with the dogs new toys too. We eventually got her to play tug-a-war with the dogs, it was great fun to watch!

We invited one of Mylee's good friends over to have a playdate. It was fun to watch them with all the new toys. It is so great to have many good friends with children Mylee's age. Mylee needs to the social interaction and it seems to really help her on all levels. We are anxiously awaiting the arrival of Khloe Elizabeth. We only a few more weeks before our new bundle of joy graces us with her presence. We will enjoy every waking moment we have with Mylee as she is in for a big surprise when she has a new baby sister. We are scheduled for the new arrival on January 28th.

Here are some great pictures of Mylee, capturing the past few days of the 2008 holiday! Enjoy!!

Make a Smilebox scrapbook

xoxo

Another Mexico Vacation

We made it through another fantastic trip down to our favorite home away from home! We had a blast with the Benjamin's, we hope to be able to travel south again real soon. We may need to wait until Khloe is born. Can you believe it, I am a little over 26 weeks now!?! I am being kept busy with Mylee's appointments and getting ready for our new addition to the family.

Mylee always has fun watching the Colts game with her daddy...we are trying to capture every happy moment with our warrior princess... she makes us laugh, cry, and smile it seems all at once! Mostly laugh and smile though.... She sure is a trooper... She underwent another sleep study last week and we are still trying to scrub the tape off of her head and neck from the EEG wires. Oh well, par for the course I guess! We also have another MRI scheduled this coming Wednesday at Children's Hospital. Our appointment with Mylee's neurosurgeon wasn't what we had hoped for. But then again, I am not sure exactly what we were hoping for! He is concerned that she has diminished muscle reflexes (lower extremeties) and that she seems to have gotten worse with her swallowing abilities. We have been referred to a new neurologist with hopes that this doctor can help Mylee. We will hopefully see him along with her current neurologist in December. I am hoping that the MRI will show that she has compressed again at her cerebellum and a surgery is all that is needed to fix my baby girl! We will for sure keep everyone posted on her status..... now back to the fun stuff!

Mexico was a blast! We spent a long 4 day weekend with our kids and dogs. The dogs had a blast running up and down the beach chasing the seagulls! And the water is still amazing, even for November! The kids had so much fun playing in the sand, looking for sea shells and of course pretending they were dogs too!

Hoping for a positive post after we get the results back from Mylee's MRI.... please keep that HOPE alive for us.... continue the prayers - Mylee needs them!

Here are some pictures from the beach, we hope you enjoy them as much as we have! More importantly, we hope that we are able to share these same moments with us in the near future!

Make an on-line slide show at www.OneTrueMedia.com

xoxox