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

[angeque143]

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

Thanks!! I have thought of you too!! Things are busy to say the least...just after seeing the neuro Eva had another seizure...Today she broke her glasses AGAIN!! They said she tripped over a ball on the playground...I am so not happy with this school....They are just not on the ball with Eva.

Finally some sunshine and I was able to get my tomatoes and basil planted!!

 

[angeque143]

Just updating a bit!~ Things are very very busy here with the end of the year happenings many many doctors appointments and then me being sick.

We are going to orientation this Friday in Delhi for Carissa It is OFFICIAL...she will NOT be going to Disney!!! We will miss her being there but she needs to start her life...FOr the past 3 years she has put her desires on hold for Eva and we must let her spread her wings....Did I mention that as she is doing it I will be hanging from her ankles weeping that another has left the nest?!?

Eva has started to eat again...We can only get in an ounce of puree but this is PROGRESS!! She has also begun to let them use the bat in her mouth and has even brought it to her mouth herself!! She is responding to therapeutic listening therapy too! AND we are up to 26 lbs!!!!

Anthony is going in for MAJOR surgery 2 days after school lets out...He has HORRIFIC teeth and his mouth is too tiny for what is trying to come in so he will be sedated and have the work done so that he is good to go for Disney!

I have been busy shuttling children to appts and let my health get the best of me. My sinuses were so infected the other day that it looked like I was popped in the face. The doctor also said that I need to stop lifting due to my having torn some ligaments from the sternum....HA!! Like I could. I honestly thought the pain was due to stress...I have had 3 court dates with Eva's dad over the past 2 week and will be having two more with him next week.....


Oh yes and we are having the bushes ripped out in front of the house to grade the front for drainage, and the entire roof replaced from storm damage and eventually we will address my formerly flooded basement


I have been trying to keep up with everyone here seems that the crowds have thinned out! I hope whoever is reading this is doing well!! I cant wait till Disney!!!

 

[kaileighbug]

No wonder you haven't been around. That's alot to deal with. Hopefully things get better. 26lbs wtg Eva

 

[mom2pixies]

We're still following, Angie! No worries!!

Sounds like a busy couple of weeks. Hope you are on the road to recovery. Glad to hear that Eva has been eating and is gaining weight and that Carissa is getting ready for college. It will be difficult not having her around, I'm sure, but she'll be having an amazing time discovering herself, the world and her place in it. My best wishes for a great orientation session for her!

Hope all goes well with the house renos. Ugh! Flooded basements--seems like the story for so many here this spring....

 

[Blyssfull]

Just wanted you to know I'm still reading along too.

Hope things are settling down and y'all are enjoying your time with Carissa before she's off to college.

 

[angeque143]

Lots of news to share good and bad...We made it to Student Acceptance Day at Delhi thanks to Grandpa...Not before finding out that a simple oil change turned out to be a $700 adventure...TIRES were shot!! I near had a breakdown because I have had a LOT of unexpected expenses come up the past few days and this broke the bank LITERALLY!!! Grandma and Grandpa came up again this week and Grandma stayed with the kiddies while Grandpa and I went with Carissa....Lovely school...I will have pictures to share later. My head is swimming with all the information that they throw at you in such a short period of time. We got Evas new AFO splints this week. They are too cute! Was back and forth with the insurance and the supplier trying to get a bed approved and was able to get the letters of justification started. I was contacted by an organization here called a Room to Heal in regards to helping Eva have a space of her own and not a moment too soon since at 5 am I found her with the feeding tube wrapped around her neck. They would like to meet Eva and go from there.

Will try to get the pictures up soon next week is a busy one with 2 court dates regarding visitation and support for Eva and AJ

 

[angeque143]

College Picture Share

Leaving Home

Arriving

Cafeteria

Carissa and I (I am making sure Eva is not giving Grandma a hard time!)

Views

Other Cafeteria

Carissa and I

Laundry Room!!

 

[blessedmom4]

I am so happy the college adventure was fun and I am praying for all of your financial woes, I can so relate. What a blessing to have grandparents who can help! I hope in the midst of all of the angst you are finding comfort in Disney planning!

 

[angeque143]

Just checking in to update. We have been very busy with "life". This week alone we are swamped with MD appts. Eva has once again gotten sick but at the moment she is controlled at home. I kinda knew it was coming just by looking at her. I am hoping that she just holds out for her Ortho appt Wednesday. We have cancelled that one several times due to weather and illnesses!

The children finish school on Friday and we are going down to Long Island for the weekend and then back here to the grind of daily MD appts for all 3 children along with surgery for AJ on the 29th. Aj starts Summer school on the 5th of July and the Eva starts on the 11th!! Still trying to plan for Disney although it will be quite different this time around cause they are into the baby things....I sure will miss Carissa because we were planning on doing the older rides together but with out her I will just forgo them.

 

[blessedmom4]

Just checking in to update. We have been very busy with "life". This week alone we are swamped with MD appts. Eva has once again gotten sick but at the moment she is controlled at home. I kinda knew it was coming just by looking at her. I am hoping that she just holds out for her Ortho appt Wednesday. We have cancelled that one several times due to weather and illnesses!

The children finish school on Friday and we are going down to Long Island for the weekend and then back here to the grind of daily MD appts for all 3 children along with surgery for AJ on the 29th. Aj starts Summer school on the 5th of July and the Eva starts on the 11th!! Still trying to plan for Disney although it will be quite different this time around cause they are into the baby things....I sure will miss Carissa because we were planning on doing the older rides together but with out her I will just forgo them.

I am sorry life got in the way of your original plans, I understand! I hope the rest of the week is uneventful and your trip away is a happy time, before the busyness of the days starts again!.

 

[angeque143]

So we spent 2 days in the hospital again...Eva does not like being sick and cannot handle mucous well. She vomited her feeds bypassing her nissen which should have prevented it! After 2 nights in the hospital she came home only to do it again!!! LITERALLY AS SOON AS WE GOT IN THE DOOR!!!!

On a good note her leg length discrepancy is only 2 mm so she does not need anything other than a yearly check up!

AJ has his oral surgery on Wednesday. Carissa is continuing with her plans for college and I am going with the punches...they have been coming faster than I can recover. Many cuts to Eva and our income!! What are you going to do....Considering going back to work part time. Our post office needs a temp carrier (alternate Sat and fill in for vacations) I may pick this up if it does not cost me too much for a babysitter.

 

[blessedmom4]

So we spent 2 days in the hospital again...Eva does not like being sick and cannot handle mucous well. She vomited her feeds bypassing her nissen which should have prevented it! After 2 nights in the hospital she came home only to do it again!!! LITERALLY AS SOON AS WE GOT IN THE DOOR!!!!

On a good note her leg length discrepancy is only 2 mm so she does not need anything other than a yearly check up!

AJ has his oral surgery on Wednesday. Carissa is continuing with her plans for college and I am going with the punches...they have been coming faster than I can recover. Many cuts to Eva and our income!! What are you going to do....Considering going back to work part time. Our post office needs a temp carrier (alternate Sat and fill in for vacations) I may pick this up if it does not cost me too much for a babysitter.

Hugs for all of the troubles and for Eva to feel better! Some days (weeks and years) life is just very tough. I am sorry.

 

[mysevendwarfs]

Prayers for all of you! I hope the surgery goes well for AJ and that Eva is feeling better soon.

 

[blessedmom4]

How is everyone feeling today? I hope it is a quiet, peaceful day for you!

 

[angeque143]

How is everyone feeling today? I hope it is a quiet, peaceful day for you!

Things are ok at the moment. I have both Eva and AJ with these horrible coughs both at night and in the morning. I am so considering investing in some stock because I have used more lysol disinfectant spray and wipes than I care to admit to!

We are possibly having Eva's dad here for next weekend and will progress from there. I am hoping that he is better but will not allow him to move back into the home without a trial run, This is both for the children as well as him.

I am a bit hesitant to do it because now I will have the addition of his mental health issues and appts on my plate. At this point this is the only solution that Gad has given me as far as what to do when Carissa leaves because without another adult I have no one here to watch AJ if Eva were to get hospitalized for a prolonged period of time.

Hoping for some summer here and an end to the rain. It really has not let up. We get a day or two of sun at most followed by 5 days of rain. I would happily pass it to those who are going through the droughts. Strange things with the weather this year!

Need to make us a count down calender again!! I cant believe we are back to that! LOL

 

[angeque143]

Good week so far. Looks like Eva has finally licked this cold or whatever is causing all the congestion. We are aggressive in her nebulizer treatments, perhaps this has helped.

AJ did really well with his oral surgery and is a trooper.

Eva and AJ's dad decided not to come and visit the children...I wish I could say that I was disappointed but in may ways I am not.

Still planning out Disney but I am hesitant because of our last fiasco. Her reveal party will be either July 23 OR August 6th we shall see!

 

[blessedmom4]

So happy Eva's better!

 

[angeque143]

JUst doing a quick check in and update...We have been quite busy with school having ended and summer school getting underway. I was with AJ in the hospital for bowel issues for the past 3 days and came home to find that we are going to be having the reveal party July 23!! I am really excited for this!

Eva is holding her own and has seemed to increase her vocabulary overnight. She talks up a storm! Funny how we cant wait for them to talk and once they do we are telling them to be quiet!

 

[angeque143]

Here is the little stinker dancing to Selena Gomez (I love you like a Love Song) and Bruno Mars (Just the way you are)

 

[angeque143]

I forgot to add that we finally got further results on our genetic testing.


I was tested for the same abnormality that Eva has and I dont have it. Eva has a duplication of genetic material on the long arm of her 15th chromosome. This is HUGE because it is a NEW diagnosis. She is now in an international data bank and will "set the path" for other children with the same problems as she. Kinda cool yet a bit sad at the same time. I hope we are able to help another child down the line.