September 6-12 is a great time to go to GKTW Eva Paige's Wish Take 2

[angeque143]

you should totally do Epcot. MY son is 3 and has PDD_NOS and nonverbal. He adores Epcot. Has since he was a baby loves to watch things.

Hmm...We are going to have to squeeze it in.. Eva has some sensory issues BUT love to watch things also...the more colors and lights the better!! She was non verbal for the most part until she got the ear tubes this past November. WHAT A MIRACLE THOSE THINGS ARE!!!

Her new glasses are ready!!! I cant wait to see her wear these ones they are too cute!!

 

[blessedmom4]

Hmm...We are going to have to squeeze it in.. Eva has some sensory issues BUT love to watch things also...the more colors and lights the better!! She was non verbal for the most part until she got the ear tubes this past November. WHAT A MIRACLE THOSE THINGS ARE!!!

Her new glasses are ready!!! I cant wait to see her wear these ones they are too cute!!

We LOVE Epcot!!! Three of ours have sensory integration disorder and one has HF autism and they enjoy it so much!

Praying Eva is feeling SO much better! I can't wait to see her cute new glasses!

 

[angeque143]

Mickey Mouse called this morning...NOT the reaction we thought that we would get LOL

It is a little noisy...we had to redcord it on the lap top because my camera is MIA!!
http://www.youtube.com/watch?v=hXZw8tR7_2w

 

[angeque143]

We picked up Eva's new glasses today!! They look so adorable on her!!! She is wearing them nicely too ...I think she knows how much she needs them since she can only see 4 inches in front of her clearly without them!!!

WE are grateful for her vision though because the doctor says that she will be legally blind by the time she is a teen Right now she is at -12.75 and -13 and we are ONLY 3!!

They are RED!!!

 

[brookerene]

Yay for the glasses... they make quite a difference... I hope that things won't progress so quickly with her sight!!! I have a friend who is legally blind but with glasses she can see enough to get by.... Take care!

 

[blessedmom4]

We picked up Eva's new glasses today!! They look so adorable on her!!! She is wearing them nicely too ...I think she knows how much she needs them since she can only see 4 inches in front of her clearly without them!!!

WE are grateful for her vision though because the doctor says that she will be legally blind by the time she is a teen Right now she is at -12.75 and -13 and we are ONLY 3!!

They are RED!!!

We will pray the docs are WRONG!!!!!

Eva looks so ADORABLE!!!! Thank you for posting the pic!

 

[blessedmom4]

Mickey Mouse called this morning...NOT the reaction we thought that we would get LOL

It is a little noisy...we had to redcord it on the lap top because my camera is MIA!!
http://www.youtube.com/watch?v=hXZw8tR7_2w

Cute! I think he was wondering why Mickey didn't let him answer his question or get a word in at all!

 

[angeque143]

Cute! I think he was wondering why Mickey didn't let him answer his question or get a word in at all!

I noticed that!! Maybe they will change it and at least let the kid get a word in edgewise!!! Poor kid has bronchitis so he was a bit under the weather this AM. He gets nervous easily so he may have been that too...WHO KNOWS

We will pray the docs are WRONG!!!!!

Eva looks so ADORABLE!!!! Thank you for posting the pic!

Thanks so much!! She is one CRAZY kid!! The doctors have been wrong before....she was to have died...Prayer changed that!

On a good note...we finally had a bit of SUNSHINE Hoping our MUD dries up soon!!! Thanks for taking the time to stop by!!

 

[angeque143]

Just a quick not to say that I will be MIA for a while....Eva was very sick last night...I awoke to her struggling to breathe and burning up with 104 temp around 2 and by 4 am we were in full blown neb treatments and using an O2 blow by.....I am awaiting the Doctors call but anticipate another admission ...Thank God that I have my older daughter here...She holds down the fort while we are 2 hours away and I can at least know that I can depend on her to take care of AJ until Grandma and Grandpa are able to get here (they are 4 1/2 hours away!) Using the O2 her sats are at 93 awake but she goes down to 88/89 at times when she is sleeping....I am hoping its not RSV again....we had it last year!! WHAT A MESS!! The good news is that she is not having seizures thru this so this is PORGRESS!! I will check in when I get a chance.


Please keep her in prayer

 

[tinytreasures]

Sending prayers. Keep us updated when you can

 

[mom2pixies]

Hoping all goes well and Eva recovers quickly!

 

[angeque143]

Eva has some sort of viral issue and has been started on prednesone and neb treatments every 2 hours. I begged the doctor to let her come home. She is so much more comfortable there...the prednesone makes her a MONSTER!!! When they did the chest xray she showed enlargement of her heart and her PAC's were showing up....We have to see the cardiologist first thing in the morning to clear her, will be a long night here. Hopefully we will be home tomorrow. For now she is content in her cage watching Minnie Mouse. Will update when I can

 

[angeque143]

Long night...The blood work on Eva's heart came back negative...this is a good thing...We had several alarms last night with her heart rate dropping when she slept but they feel that it is ok...We need to follow up with cardiology outpatient and see what all the increase in PAC's are about. I think they are going to have her wear a holter....Eva will eventually need a hernia repair surgery (from her last surgery in November) but other than that I am thinking that we are going HOME!!! Her breathing is much better and she is a bit less congested this morning. Prednisone is a wonder drug!

Her pulmonoligist wants to do a sweat test to r/o CF but I think he is just being through....he changed all her meds and is being very aggressive with her.

Thanks all my DISfriends for the prayers they are so working....

 

[tinytreasures]

Glad she is doing better. I hope you figure out what is going on.

 

[angeque143]

Glad she is doing better. I hope you figure out what is going on.

Thank you so much...Part of our difficulty is that when she was born yes she was in a NICU but she has never goetten a through work up...I more or less had to put my foot down and find each and every specialist that she has...I have fought for every diagnosis...LITERALLY demanding testing and REFUSING to leave the hopsital unless things were addressed....This is part of the problem all along...They are still doing workups in genetics and neurology. I am used to fighting for her though with all she has been through I would have it NO other way...she deserves the best and I will deny myself anything to make sure she gets it as would any other mother here~

I think the blessing in us having children in these situations is knowing their strength in adversity and learning from it. I remind myself every day that she is a gift and I treasure every accomplishment because they are hard earned.
I have been told on more than one occasion that Eva is an enigma because children born at 22 weeks are so rare...My daughter has NEVER done what she should though!!! She has ALWAYS done things on her own time.

I just cant wait to go home...I awoke looking like someone socked me in the eyes!! HA! Must be the allergies kicking in!

 

[angeque143]

AJ and Eva received adorable postcards today from Mickey and Minnie...Eva is a bit red from having been crying but the tears stopped when she saw Minnie and she has not let go of her postcard!!

Thank you Fairy Godmailers!!!

 

[brookerene]

How cute!

 

[blessedmom4]

So thankful you are home, I know tonight will be a SWEET SLEEP!!!

 

[angeque143]

So thankful you are home, I know tonight will be a SWEET SLEEP!!!

Aw thanks!! Although it is GREAT to be home...NOT so great to wake up sick!! I have the WORST sinus infection EVER!! What are you going to do? LOL

 

[angeque143]

I just had to share...I have been waiting for 3 YEARS to hear this and today it clicked!!!

EVA CALLED ME MOMMY....not just repeating it but ACTUALLY calling for me!!!

YOU cannot understand how this brought me to hysterical tears!! God most definately blessed me today!!

I was having such a bad day and was sick but this certainly changed my day!!