Tuesday, November 19, 2019

November Encouragment

Although its been a rough month we have had some very awesome highlights.  We received two unexpected packages <3  from long distance friends and Glory was so touched she even decided to pass on the act of kindness by making up a care package for a neighbor and her cats. In one of the packages we received a pet carrier for Glory's guinea pig to bring him out with us and some gifts for Glory and the pets.  This is making Glory's anxiety about leaving the house a little easier to handle and it was such a kind loving gesture.  The other package was food <3 and was also at just the right timing as John had been working such weird late hours and hadn't had time to go shopping.
















Glory decided to pay it forward  <3




Because after all what would we do without pets AND FRIENDS in our life <3




Her Pans/Pandas peer zoom Chat has just been such an amazing outlet <3 look at that smile




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 Two steps forward, ten steps back.  Each flair seems to take away her writing and reading progress.
John is going to help me try to set up a 'speach to text' program on the computer to help bridge the gaps.                            "Name  - Bob
                                      Planet - Eleoentay
                                      Gender - Transgender
                               Goes to the mountain to the west every night."
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Monday, November 18, 2019

We are the Warriors

My friend Ali, made this amazing song in support of kids everywhere suffering from the same disease as Glory. Its been a very hard fall for her.  Every little bit of support helps... and we are grasping at straws trying to get some. It is heartbreaking how hard it is to find any.  Maybe one day the insurance coverage bill will even be passed in our state of NJ.  As of right now it seems like an impossible goal.  So many things discourage us.   The support of our pans/pandas friends is so appreciated and really priceless.   In a world where everyone is busy with their own life its easy for Glory to fall into depression when she gets stuck at home and even people who know her display so clearly they just don't understand. This is making dealing with life so hard for her.  With no extended family due to being raised in the Jehovah's witness cult, it can make this time of year especially hard for us.  Here when most people gather around friends and family we are stuck at home alone avoiding germs because even in small close knit groups they just don't understand the importance of mentioning illness, so its safer to just stay home.  Thankfully she now has an online zoom chat peer support group that meets regularly multiple times a week.  This is her rock right now.  One day I hope she is surrounded in person with friends who really understand her and support her the way she so desperately needs it.... people to rally around her and urge our state to care enough to force insurance to cover treatments that could save her life.  That is what she needs.  For now … we sit at home .. avoiding triggers to her immune system ... hoping that day comes before its too late.

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Friday, November 1, 2019

October







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As is usually the case come fall Glory starts
having more health troubles with her autoimmune disease,
but she has done better so far this year than the past 5
now that we have a diagnosis and know how to treat it.





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Glory insisted on making her own costume this year <3

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Fall baking fun



Dragon Bread

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She did it !!! for the first time despite all her
brain inflammation troubles and dyslexia she completed 
a cross word puzzle by herself !!



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Poetry and Tea time has been extra fun every day with Juliet joining us 


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4H










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Art Class with Miss Gina 
(perspective)





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Cheer







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Soccer 










Practicing with daddy

and on Wii fit



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Clay






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Nature Club 










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Slime !! 

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Pans Awareness Day
























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And just like that we are opening a book a night with a treat until xmas !!! 












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Glory's Words (in order of when spoken and constantly used)

Glory's Words (in order of when spoken and constantly used)

1. 'Dada' (3 months)
2. 'Mama' (4 months)
3. 'Kitty' (7 months)
4. 'Doggie' (8 months)
5. 'Baba' -bottle- (8 months)
6. 'uh oh' - when dropping something (or throwing something :)
7. 'No no no no' -when about to do something she knows she's not supposed to do- (9 months)
8. Hot (9 months)
9. 'This?' -what is this?- (10 months)
10. 'That' - i want that- (10 months)
11. 'mooooohh' - Elmo from sesame street (10 months)
12. 'Aeeyyy' - Abby from sesame street (11 months)
13. 'Ert' - Bert from sesame street (11 months)
14. 'Ernie' - from sesame street (1 year)
15. 'Weeee' - thanks to little people playground
16. 'Block' - building blocks
17. 'Fish' - because of a picture book
18. 'Tree' - because of a trip to the park
19. 'Cook' - (13 months)
20. 'Cup'
21. 'look kittie !'
22. 'Bath'
23. 'Kiss'
24. 'ook' - Book (she can't say the letter 'b')
25. 'Ducky' (15 months)
26. 'Coke' - when pointing to my can of soda
27. 'touch that?' - when pointing to the painting in the living room that we lift her up and let her touch.
28. 'No' (while shaking her head no) -when she doesn't want to do something or doesn't like something or is done eating or drinking
29. 'Woo Woo' (poop)
30. 'Yeah' (yes)
31. 'Clock'
32. 'I' (for 'I love you through and through' her favorite book)
33. 'Froggie' (16 months)
34. 'Wow!'
35. 'Giraffe'
36. 'Wash'
37. 'Yucky'
38. 'Horsey'
39. 'Eyes'
40. 'Rock'
41. 'Nice Kitty'
42. 'Mouse'
43. 'Hair'
44. 'Nose'
45. 'Mouth'
46. 'Cookie' 17 months
47. 'Monkey'
48. 'Elephant'
49. 'Kiss'
50. 'Alligator' (thanks to starfall)
51. 'Cheese'
52. 'Hi' (Hiiieeeey! LOL)
53. 'Nice' (gentle - after being told to 'be nice' ie don't hit)
54. 'Oh No!'
55. 'Splash!' (thanks to little people bath bar)
56. 'Dolphin' ("")
57. 'Pocoyo'
58. 'Bye Bye Dada'
59. 'No No No Bad Kitty!'
60. 'Arrrggh' (like a pirate - thanks to backyardigans)
61. 'Blues Clues'
62. 'My Paci!' (Pacifier)
63. 'Cool!'
64. ' A Clue ! A Clue!' (from blues clues -when she saw a blue paw print on the tag for her unicorn)
65.'Good dog woof!' (after Ubu sit at the end of family ties lol)
66. First song with actual words 'Blues cluuuuuues Blues clues'
67. 'Ooooo wow cool!!!' 18 months
68. 'Color?' (when she wants her crayons)
69. 'Chair'
70. 'Turtle' (blues turtle Torqoise)
71. 'A' (the letter)
72. 'Cheek' (learning names of body parts)
73. 'Doll'
74. 'B' (the letter)
75. 'Ball'
76. 'C' (the letter)
77. 'D' (the letter)
78. 'E' (the letter)
79. 'Juice'
80. 'Ooooooh wow!! Look!!!! Look !!!' (while pointing wildly at something she likes)
81. 'five?' (as in gimme five) :)
82. 'wazzzat?' ('what's that?')
83. 'Here ya go' (when handing us something)
84. 'Ostrich' ! (wow! thank you little people a-z zoo)
85. 'what's this?'
86. 'Oscar the grouch' (double wow! playing with her Oscar the grouch doll and she said 'what's this?' lol so i told her and now she knows !)
87. 'Big Horsey'
88. 'Dinasaur!'
89. 'Bye Bye See ya later' (19 months)
90. A reAffirmed Passion for saying the word 'No!' to just about everything.
91. The whole Alphabet !! (i'm not going to list each letter individually lol including their sounds!)
92. 'Blue'
93. 'Stop!'
94. 'Go!'
95. 'Igloo' (thanks to Starfall.com)
96. 'Car'
97. 'Shoes'
98. 'Apple!' (Finally! lol)
99. 'Yes!'
100. 'Thank You.' :) my favorite so far
101. 'Up'
102. 'Down'
103. 'On'
104. 'Off'
105. 'Nasty!' lol
106. 'Yucky'
107. 'Pig'
108. 'Cow'
109. 'Popcorn'
110. 'Girl'
111. 'Yellow'
112. 'Red'
113. 'Pink'
114. 'Green'
115 'Purple'
116. 'Black'
117. 'White'
stopped counting :)