Wow...I can't believe it's been a month since I posted last. Anyways....Holly's functions are in the 90% right now which is GREAT. She is still MRSA & PA positive BUT it hasn't affected her at all so far. Soccer is done so right now we are just waiting to on my sister to have my niece anyday & enjoying summer time. She loves to go to the aquatic center or play outside in the sprinklers. Isabel has just been chilling out also....she's a home body so she doesn't like to get out & do too much.

I will update after we get more updates on her next clinic visit or should anything happen between!

So, today was Holly's 504 enrollment meeting where there's a social working from our clinic, the school nurse & pretty much everyone that has anything to do with Holly's schooling meets to make a "plan" for next year. I hate these things because they just force you to hear things you don't really want to hear. As a parent no one wants to hear how your child has failed, not because they are incapable because they have a medical problem that holds them back.
As I sat there & listened to the goals from the school point of view about her education just to hear the clinic social worker fire back with, lets not get too ahead of ourselves, you never know what could happen in the next few months I was almost in tears. In one way I know where her teachers are coming from, they want to set goals that give her something to work towards but on the other hand I understand the social worker, they want to make sure the goals aren't too far out of reach & that we have a backup plan. I really couldn't respond in a professional manner because it's really hard to sit there & come to the realization that your child just failed Kindergarten because she missed so many days, it kinda makes you feel like you failed as a mother.
I just want whats best for my princess. I will do anything to help her succeed but there comes a point where it's all too much. I just want her to live her life & be happy. Living with this uncertain chaos is enough to drive a person insane. I have learned to just live & do what I think is right, it doesn't matter what anyone else thinks of how I raise my child or how they behave or what they think I should do or what goals they think she shoudl have because I am her mother & there isn't another soul in my immediate surrounding that could possibly understand what it's like to sit through a meeting like this & keep yourself together. Everyone can feel pain in their hearts for Holly but I don't know many who can feel the pain a mother feels listening to others decide thier childs future.
I don't want anyone to take this the wrong way, I know my family & my friends love Holly but it's still not the same feeling you get when it's about your child. I guess I just came to the realization today that no matter how hard I fight for her it's just not enough & it never will be. I will never be able to help her the way a mother should be able to help her. I have been left hopeless. I guess it doesn't help that this is genetic, so not only can't i help her...i caused it.

Medically wise I want everyone to know that Holly did really well at her clinic visit last week. Her FEV1 was 89% which is really good for her. The lungs looked really good & there wasn't a present infection that showed up, I have recieved the sputum culture results back & they were all NEGATIVE so yeah for that, I was so super excited about it!!! They did however stick the tube thing down her nose while she was awake & she wasn't a happy camper about that....here's to growing up & going without sedation & just mild numbing meds !!!!!

Fun times...

So we decided to take advantage of the warm weather & have some much needed fun this weekend. We had a blast & I am so thankful that I was able to spend this time with my kiddos!!! These pics are backwards as we went to the beach on Saturday & the Zoo on Sunday...but both were of equal fun & even though I am burnt to a crisp we actually accomplished getting Isabel to enjoy herself in the water...so heres the pics!!! I still don't have a day for either the CT or the perfusion scan so I will post as soon as I know more about that. She seems to be doing a little better even though today she had this cough that sounded like the winds of a hurricane & she is producing more mucus I'm sure that antibiotic is kicking some tail in those precious little lungs of hers!!!

This is Isabel posing!!! She is so prissy & has such a little attitude! I am sure that in a few years I will look back & wonder why this made me smile but for now it's cute & I wouldn't have it any other way!

Once again....showing that Isatude as I call it...it's our word for her "spunk"

These here would be the 3 kids entering the zoo!! Maxton came ith us & had some laughs. He is oh so cute also. Since I don't have any boys I pretend he is my adopted son! His mommy has also adopted our kids & we vow that they will forever by raised together....haha!

at this point of time she is just testing the sand to see how she liks it....shes not really into dirt!

Holly will jump right in though....nothing will hold her back.

Here's Holly taking a much needed break. Her meds can cause a sever sensitivity to sun so we were extra careful to keep her lathered up to be protected from those uv rays....she still got a small burn on her back though.



This is my favorite picture...the beach in the background & her looking oh so innocent!

& the results are.....

We will wait for the antibiotics to work thier way through her immune system & kill some more buggies....sometimes within the next 2 weeks we will have a ct scan then after that is complete & we wait for the results we will anticipate that she will be breathing a little easier from being medicated we will proceed with a ventilation perfusion scan & then we will wait for the results of that. Then we will see the doctor again...the best part of all of this is the waiting. As you can see, I'm thrilled to be waiting. Right now life is a game of waiting. I can't explain the feeling of waiting to hear what will be the next step in your childs health care based on certain results of medical testing. It can be some of the most frustrating & trying times a parent will go through. It's like being lost somewhere that you can't ask for directions until you are at the end of the road then having to turn back around to travel the path again. But we will continue to pray & I have faith that this is something that will quickly disolve & we will have no worries after the meds kick in & this will be mothing more than a distant unpleasant memory.

Speaking of memories....today we went to the mall after clinic was done, great stress reliever. Let the kids play in the play area (yuck, I know germ city) & let them ride on some $0.75 rides & it's pure bliss to see that smile light up the room from the children!!!! Then the mommies went & got a hair cut....& highlighted since it's been an ever so stressful week we deserve it I think...here are some pictures of todays FUN!!!

This is the sign that we are doing something right!!!!

Our kids love each other

Isabel striking a pose....this was just too darn cute to pass up

Max in a state of shock.....you mean this moves....well yeah if you put money in it!!!!!

Then there's the mommies hair cut!!!!!

So, that's all for now folks----->be back for more later....maybe a happier post coming this weekend!

Again

Would it be too much to ask for more at home time like this.......

& for a little less of this

We will be in clinic today to do PFT's & see how well the antibiotics have worked so far....& this is why our lovely life is up & down right now. I have slept 3 hours in the past 3 days because I am still working, while taking care of sick children during the day & trying to allow my princess to enjoy some of the funner things in life just in case this leads to yet another agonizing hospital stay with IV tubes coming out of her precious little arms. I know shes worried also because she is constantly speaking about things she would like to pack to take to the hospital with us this time....it's sad when your 5 year old knows what she needs for a basic hospital stay.

I know it could be worse & theres people out there that have so many more problems & battle so much more but for once I just want a break.

Sick again

Well, Holly was seen yesturday & she has a lung infection. It's her left lung again, not to my surprise because this is a lung that likes to cause trouble. Against my better judgement I am still allowing her to go on the field trip to the zoo today. I will be there with Isabel so I feel comfortable that she's going to have a good time. We will be seen in clinic on Friday. They took some sputum samples to be tested for MRSA & pseudo.....let's pray that this isn't what it is....we have been free of that for a while & I don't want to go back down that road. They put her on Bactrim & Zithro....we will wait & see how it works. I will post some more when I know more of what's going one. Right now we just have to play it out.

The waiting game

Holly had another soccer game--she did well overall. She actually kicked the ball this time!!! I am so proud of her. Isabel has the stomach virus.....yuck! Holly is also sick...she has a fever. She will be seen tomorrow by her ped & the clinic on Friday....please pray that this is just the stomach virus. Im just thinking of the could bes & the maybes...can't help but to think about those. Now we just sit back & play the waiting game...waiting for the test to come back, waiting for the docs decision. CF is just something that becomes more visible in our lives every day. Today I had to tell Holly that she might miss her field trip to the zoo because I don't know what is going to happen at the doctors visit. She cried, she just wants to be a normal 5 year old & play with her friends...instead shes scared of getting an IV or having to be admitted...it's really heartbreaking but shes tough!!!! Here are some pics from her game!