Will wonders never cease?!?
As most of you know, we have become accustomed to dealing with a LOT of horrible things. I actually think we do an amazing job of maintaining a sense of gratitude and humor through our challenges, but man...it does get tiring. This week has been amazing, though and I want to remember some very important moments!!
First, on Monday, Sophia told me that Jesus said he was growing a new baby for us in mommy's tummy. I had just had a negative blood test the day before and thought she was either suddenly confused about Matthew (she always talks about how he went to Heaven and she misses him) or was just wistfully thinking about her hopes. Obviously she was RIGHT...only a few days later we got our BFP!
That same day, we got the word that DH is one of the final 2 for that terrific job not too far from home!!
We also found out that a nurse at Children's Hospital had contacted our local YMCA about how warm water would help Sophia's joints and they said they were going to give our whole family a 12 month membership!!!
Of course you already know that we found out on Thursday that we got our Rainbow Baby!!! :-) (Crystal almost has me convinced it is a boy, too!)
QUICK HISTORY FOR THE NEXT WONDERFUL PART OF THIS WEEK: Last week we had a devastating appointment with the pain management team at children's hospital...actually just with the young, arrogant, crazy psychologist. She told us that she believed we taught Sophia to "think" she was in pain because DH & I have chronic pain. She wrote up a big report to that effect and we left in tears. She had been the key to us getting alternate treatments to help Sophia & she essentially said that Sophia learned at 3 months of age to FAKE pain...so her pain in this woman's opinion is imagined and Sophia doesn't need help. She even said that her migraines & intussusception are "not painful" and her allergies are probably psychosomatic ways to avoid food (HER FAVORITE FOODS ARE ONES SHE CAN'T EAT).
Our biggest fear was that this report would impede our ability to progress with other departments, if the docs were to place ANY credence in what she says. So, on to the good news...maybe OTHER departments will put weight in it, but the Department Head that we saw Friday in Infectious Disease brought up specific details that prove the sincerity of Sophia's pain and she spent THREE HOURS working to figure out a good course of action to try to use diagnostic tools and coordinate care with Immunology, Rheumatology, etc. She was WONDERFUL and completely accepted the truth of Sophia's pain. PRAISE GOD!!
Friday, I encountered one idiot after another in the labs I have been using and no one would give me my lab results. (Their policy is that the patient can have their own results with a signed release form). So, I couldn't get the value of my 2nd HCG Quant, unless I went to the main hospital lab...which I planned to do today. Instead, one of my doc's associates called (HELLO?! TODAY IS SATURDAY!!) and went over all lab results and gave some advice, etc. She was terrific!
And...the last story in this typically long tale is about the Father/Daughter Ball! My DH has taken our 12 yr old to the ball every year since she was 4. She always wears a fancy dress and he dons his tux. (Every PAST year, he also bought her REAL jewelry...diamond necklaces/bracelets/etc. and she has cared for & treasured every one!...This year we can't afford a vending machine plastic ring..lol) They have always done an elegant PRE-Ball dinner and then had a wonderful night with formal portraits, dancing, appetizers and games. This year there would be NO dinner, but luckily portraits & other things are included.
Sophia knew this dance was coming up and wanted to go...she's been talking about it every day for a month and TONIGHT was the night. It was no longer a special night just for our oldest DD & Daddy(sniff sniff) and we couldn't afford dinner or jewelry, but our oldest DD was very excited to have Sophia come.
Sophia even let us do her hair for the event(unheard of)...wanted her nails painted...got as adorable as she can be and couldn't wait to get out the door! As soon as they got there and got pics done, Sophia wanted to start to boogie. LOL I guess she was quite the show-stopper with her WILD dance moves...complete with sporadic windmill arm motions and random kicks and leaps (must be moves her dad taught her...lol) When the first slow song started (Butterfly Kisses) she said, "Hey, what's going on here? What happened to the music?!?!...it's so sad now!" lol She danced and danced and danced. She would punctuate the night with brief"Daddy my (back, hands, whatever) hurts." Then immediately with "may we dance one more song?" LOL She did not want the night to end.
I had contacted the catering company to find out what treats they would have at the Ball, so I could make similar-looking allergy free treats for Sophia and she was DELIGHTED!! She thought hers were the same as everybody else's!! :-)
What a night for her. She was drifting off to sleep as I changed her for bed and kept mumbling details of the night..how she felt like a princess...how she danced all night...how she hopes Daddy can take her again tomorrow night...so sweet. Reminded me of Eliza Doolittle in My Fair Lady. lol
HAPPY HAPPY HAPPY!!! What an INCREDIBLE WEEK!!! After walking through trials for so long, we are just cherishing every positive thing in our lives!!! This week has been OVERWHELMINGLY amazing!! :-)
You ladies MUST be praying for us!!
First, on Monday, Sophia told me that Jesus said he was growing a new baby for us in mommy's tummy. I had just had a negative blood test the day before and thought she was either suddenly confused about Matthew (she always talks about how he went to Heaven and she misses him) or was just wistfully thinking about her hopes. Obviously she was RIGHT...only a few days later we got our BFP!
That same day, we got the word that DH is one of the final 2 for that terrific job not too far from home!!
We also found out that a nurse at Children's Hospital had contacted our local YMCA about how warm water would help Sophia's joints and they said they were going to give our whole family a 12 month membership!!!
Of course you already know that we found out on Thursday that we got our Rainbow Baby!!! :-) (Crystal almost has me convinced it is a boy, too!)
QUICK HISTORY FOR THE NEXT WONDERFUL PART OF THIS WEEK: Last week we had a devastating appointment with the pain management team at children's hospital...actually just with the young, arrogant, crazy psychologist. She told us that she believed we taught Sophia to "think" she was in pain because DH & I have chronic pain. She wrote up a big report to that effect and we left in tears. She had been the key to us getting alternate treatments to help Sophia & she essentially said that Sophia learned at 3 months of age to FAKE pain...so her pain in this woman's opinion is imagined and Sophia doesn't need help. She even said that her migraines & intussusception are "not painful" and her allergies are probably psychosomatic ways to avoid food (HER FAVORITE FOODS ARE ONES SHE CAN'T EAT).
Our biggest fear was that this report would impede our ability to progress with other departments, if the docs were to place ANY credence in what she says. So, on to the good news...maybe OTHER departments will put weight in it, but the Department Head that we saw Friday in Infectious Disease brought up specific details that prove the sincerity of Sophia's pain and she spent THREE HOURS working to figure out a good course of action to try to use diagnostic tools and coordinate care with Immunology, Rheumatology, etc. She was WONDERFUL and completely accepted the truth of Sophia's pain. PRAISE GOD!!
Friday, I encountered one idiot after another in the labs I have been using and no one would give me my lab results. (Their policy is that the patient can have their own results with a signed release form). So, I couldn't get the value of my 2nd HCG Quant, unless I went to the main hospital lab...which I planned to do today. Instead, one of my doc's associates called (HELLO?! TODAY IS SATURDAY!!) and went over all lab results and gave some advice, etc. She was terrific!
And...the last story in this typically long tale is about the Father/Daughter Ball! My DH has taken our 12 yr old to the ball every year since she was 4. She always wears a fancy dress and he dons his tux. (Every PAST year, he also bought her REAL jewelry...diamond necklaces/bracelets/etc. and she has cared for & treasured every one!...This year we can't afford a vending machine plastic ring..lol) They have always done an elegant PRE-Ball dinner and then had a wonderful night with formal portraits, dancing, appetizers and games. This year there would be NO dinner, but luckily portraits & other things are included.
Sophia knew this dance was coming up and wanted to go...she's been talking about it every day for a month and TONIGHT was the night. It was no longer a special night just for our oldest DD & Daddy(sniff sniff) and we couldn't afford dinner or jewelry, but our oldest DD was very excited to have Sophia come.
Sophia even let us do her hair for the event(unheard of)...wanted her nails painted...got as adorable as she can be and couldn't wait to get out the door! As soon as they got there and got pics done, Sophia wanted to start to boogie. LOL I guess she was quite the show-stopper with her WILD dance moves...complete with sporadic windmill arm motions and random kicks and leaps (must be moves her dad taught her...lol) When the first slow song started (Butterfly Kisses) she said, "Hey, what's going on here? What happened to the music?!?!...it's so sad now!" lol She danced and danced and danced. She would punctuate the night with brief"Daddy my (back, hands, whatever) hurts." Then immediately with "may we dance one more song?" LOL She did not want the night to end.
I had contacted the catering company to find out what treats they would have at the Ball, so I could make similar-looking allergy free treats for Sophia and she was DELIGHTED!! She thought hers were the same as everybody else's!! :-)
What a night for her. She was drifting off to sleep as I changed her for bed and kept mumbling details of the night..how she felt like a princess...how she danced all night...how she hopes Daddy can take her again tomorrow night...so sweet. Reminded me of Eliza Doolittle in My Fair Lady. lol
HAPPY HAPPY HAPPY!!! What an INCREDIBLE WEEK!!! After walking through trials for so long, we are just cherishing every positive thing in our lives!!! This week has been OVERWHELMINGLY amazing!! :-)
You ladies MUST be praying for us!!
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