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

[blessedmom4]

I will be back to catch up on what I have missed later. ENJOY your day!!!

 

[angeque143]

WE ARE HOME!!!!

Eva is doing well so far but she has a long way to go. She needs to gain the 2+ Lbs that she lost and be able to eat by mouth again. She is very weak and wobbles when on her feet but we are home...How sweet it is!!

 

[blessedmom4]

WE ARE HOME!!!!

Eva is doing well so far but she has a long way to go. She needs to gain the 2+ Lbs that she lost and be able to eat by mouth again. She is very weak and wobbles when on her feet but we are home...How sweet it is!!

PRAISE GOD!!! May the recovery be QUICK!!!! Much Love and Many Blessings to you all!!!!

 

[angeque143]

PRAISE GOD!!! May the recovery be QUICK!!!! Much Love and Many Blessings to you all!!!!

Thank so much!! Very scary experience that I do not want to go through again...The doctor said that she lost over 30% of her lung capacity...Honestly I was really scared that she would not pull through this one. The fight in that child is amazing...I am so blessed to be gifted with her.

 

[Singledad]

I am at a loss of words this morning, just know my heart, love and prayers go out to you, Eva and the whole family!

 

[Blyssfull]

YAY! for being home and back to some sort of normality.

Hope she continues to get better quickly. Still praying for you guys.

 

[mom2pixies]

Glad to hear you guys are back home and Eva is starting to recover. Keeping fingers crossed that she gains some strength and lung capacity (and weight!) back soon....

 

[angeque143]

So we are starting to get ourselves back to normal...IS THERE REALLY EVER A NORMAL???

Yesterday I did the basics as far as stocking the fridge again and then took Aj to our local farm stand Frog Pond Farms...They are FANTASTIC there...WE got our flowers for outside and veggies for the garden. Looked at the bunnies and ducklings and the chicks...Really thinking about chickens next year...I am becoming quite the country girl!!

Spring has finally shown its face here. I cant get over all the leaves that were not here 10 days ago!! We were even able to see 6 new calves on the farm down the street. They are so stinking cute!!

We cancelled our dining reservations for next week and I was able to book again for September. Kinda sad that we are going to be in Disney before the Halloween events...We miss it by a couple of days but we will still have fun!!

Does anyone know what is going on between the 6th and the 12th...I am thinking not much due to school having started and all. I am so sure that the crowds will be minimal which is always a welcome plus!

Eva is doing quite well she still goes into coughing fits and they seem to scare her because they always end with her crying...poor kid! I wish I could wave my wand over the kids when they get like that, it is so hard to watch.

Welll off to catch up on the laundry...no mice here to help out but boy that would be GREAT if there were!!

 

[rayleechristian]

So glad I found you!!! Hope you don't mind if I follow along!! We will be there in September too!! The funny thing too is that my name is Carissa. I always feel a little special connection because it is such an unusual name. Take care and I glad you're home. Also, I trying to figure which parks to go to on which days, any suggestions?

 

[angeque143]

So glad I found you!!! Hope you don't mind if I follow along!! We will be there in September too!! The funny thing too is that my name is Carissa. I always feel a little special connection because it is such an unusual name. Take care and I glad you're home. Also, I trying to figure which parks to go to on which days, any suggestions?

HA!! Small world! Maybe we will run into each other...I have no clue as to when to do what park...I know we will be at the Magic ZKingdon on Saturday the 10th due to a character lunch that we have set up at the Crystal Palace...other than that I think we are doing Sea World on Thursday so we can be there at night for the Christmas party.

I dont think my Carissa wil be going this trip! She is starting college in the fall and she cant miss classes...so no Carissy!!

 

[angeque143]

This has been a week of mixed emotions here. I have been thrilled that Miss Eva is getting back to her normal self. Last night is the first night since the
28th that I have been able to more or less sleep minus getting up for the feed pump alarming because I let it run out of food

The child has been driving me crazy though with opening up her feeding tube ...I have it taped and SO far it is holding...We went thru all kinds of tape to get it shut...She likes to open the medication port on the side so after trying duct electrical silk and lastly paper tape we FINALLY got it to where she cannot chew it off and get it open. Amazing that the child will NOT eat a morsel of food...she coughs and sputters...but she sill stick ANYTHING not food in her mouth!

A little down this week knowing that we should have been in Disney...the kids more or less have taken it in stride I feel for Carissa the most because with it now being put off she will most likely not be going with us...She is supposed to be starting college an hour away from here (sleep away) this fall...We are still dotting the i's and crossing the t's.....I am not removing her from the wish though until it is a done deal!!! So we packed away all our necessities that we have gotten for the trip...I must say in some ways it is noce to have the space back! I just wich it was under other circumstances.

Eva went to the doctor a couple of days ago and she gained back 6 ounces of the 2 1/2 that she lost...the was done with her being on the pump 24/7 so when she starts school next week she is going to gain at a much slower rate since she cannot attend school with the pump on!!

After a beautiful sun filled week we are predicted to get 10 days of rain...I so hope the weather service is WRONG!!! I need to get my garden in and was delayed trying to find someone to till a plot for me!!

I hope everyone has a WONDERFUL weekend!!

 

[angeque143]

Just venting here ...no need to read any further....

Things here have been difficult mostly for me...I just feel like I am being pulled in 40 different directions when it comes to Eva. We got denied for a bed that is ABSOLUTELY necessary for Eva...She cannot continue to sleep where she is because frankly she only has a 2 inch area left when she is straight. To purchase it it would cost me 8000~!~ We then received her annual assessment...There is something about seeing that your child is functioning at 50-65% below level that tears one apart. I think seeing it on paper is that hardest part of all.

On the up side Eva is finally well enough to attend school and did so today. I am glad that she will be able to begin her therapy again and perhaps we will get a bit of consistancy.

Today going to school!

I am just way overwhelmed today so I am sorry if I sound like I am feeling sorry for myself....I just want Eva to thrive and progress and for her it is always such a battle.

 

[angeque143]

We had our CSE 2 days ago and will now get pt and Ot in school as well as in the home. We were rejected for Eva's bed which while at the time I was devastated, it turned out pretty well. I found a better bed that seems like it would be a better fit and best of all it meets Eva's needs.Oh and it is $3000 cheaper than the other one LOL!!!

Yesterday I got a call from Eva's school and she had a new seizure...UGH...It never ends. Two calls to the neurologist they finally get back to me at 8 pm at this point she is out for the night. They tell me nothing good and hang up....I am so frustrated with things, wondering if all this is really worth it and if we should even go to Disney because it seems like we are jumping thru hoops lately.

This morning AJ awoke with bruises all over his legs and we are thinking it is a side effect from his ADHD meds. I cant win...I really cant.

Sometimes I just want to bury my head in the sand!

 

[Blyssfull]

Continuing to think about and pray for you and your family.

I know at times things seem so unbearable but I know that if y'all hang in there, your trip to Disney is going to be even more special. To see those little faces light up at all the magic will be a way to heal wounds. You guys really deserve this trip!

I hope you get the answers you deserve and can get things sorted out with AJ.

Hang in there.

 

[angeque143]

Continuing to think about and pray for you and your family.

I know at times things seem so unbearable but I know that if y'all hang in there, your trip to Disney is going to be even more special. To see those little faces light up at all the magic will be a way to heal wounds. You guys really deserve this trip!

I hope you get the answers you deserve and can get things sorted out with AJ.

Hang in there.

You are so so sweet!!

Just a bad week but it can only get better...I hope!!

The doctor wants to do some testing on AJ he said that the bruising is NOT from the meds. So we are going in for some blood work and xrays. Then we will have a chat.

Eva goes to the Neuro tomorrow and we are hoping that they just need to tweak her meds and all will be right. The seizures were not unexpected since her head is so tiny for her age, so her brain does not have much room for growth. I just did not want it to start so soon.

Glad to see that everyone is still here after Saturday's predictions.

 

[angeque143]

Our neuro appt went well. The doctor concurs that Eva is having some issues at this point we will add B6 to her medications and do a level and see where her Keppra level is. If she continues to have issues we will do another EEG.

She also assessed her motor skills and sees that Eva has a coordiation problem...this is either from being so premature or it is a neuro problem....We agree that her functioning level is that of an 18 month old.

Her head grew again and now meaures at 45.5cm!! This is a great thing since for the longest time it did not progress at all.

So at this point we sit and wait. It will be a month before we get the Genetics results from my sample and then we can go foward in seeing what they found in Eva's.

 

[mysevendwarfs]

Your little miracle Eva is just precious! I found your trip report today and read through much of it. Dec. 4 is a special day in our house too with our son and my sister's birthday. I am so glad you are home after that big scare and we will pray for continued good news. Hopefully, it will work out that Carissa can go with you. You will be in our prayers.

 

[angeque143]

Your little miracle Eva is just precious! I found your trip report today and read through much of it. Dec. 4 is a special day in our house too with our son and my sister's birthday. I am so glad you are home after that big scare and we will pray for continued good news. Hopefully, it will work out that Carissa can go with you. You will be in our prayers.

Aw...Thanks!! Eva is surly an inspiration to us!! No, Carissa will not be going...She got into Delhi and will be attending school there this fall...She is ok with it and wants to forge ahead with her future. I so understand that but we will miss her being with us!

 

[mom2pixies]

Hoping all is well with your trio of kiddos! Glad to hear that Eva is growing! Some much-needed good news, I'm sure!

 

[cogero]

Angie I haven't been around much but I have been thinking of you and the kids.