Lucy update

I am almost afraid to say it, I think we are coming home !
If all goes well today we should be home by tonight .

This was a VERY crazy hospital adventure.
Lucy had been complaining her stomach hurt for over a week. She did not have a fever, but had continual stomach pain around her belly button. She could still play , go to school and eat so we thought it was just her being a little nervous . Then she started with a high fever and vomiting. So we thought it was a stomach virus. She felt better the next day but the pain in her stomach moved to her right side. The following day she started again with a high fever and a lot of pain on her side. So at this point we thought it could be her appendix. We called the pediatrician who agreed and we were off to the ER AGAIN!!!!!
She had Blood work ,X Ray , Ultra sound and CT . The CT report - ruptured appendicitis with inflammation .
So IV antibiotics were started as we waited for a special anesthesiologist to be called in for Lucy because of her difficult airway to anesthetize. As we were waiting for surgery the surgeon came in and reported that her CT was read by a second radiologist who disagreed with the first radiologists findings. The second radiologists report -inflammation around the cecal pole and ileocecal valve which can not be otherwise explained . Enteritis or other cause of mesenteric adenitis (inflamed lymph nodes) might be entertained. SOOO what does this mean ? Lucy came very close to having unnecessary surgery . I had no idea that adenitis mimics appendicitis . The plan was to observe her to make sure things improved .


This morning she is feeling a lot better. She still has the pain on her side but the Doctor feels this should continue to improve as the inflammation and swelling go down .
The plan is TO GO HOME !!! YEAH
Her Doctor did advise us to return immediately if she should start with a fever or more pain because the inflammation around her appendix could cause it to rupture.

Hoping when we get home that everything is OK with the other kids , I definitely need a break from this Hospital and ER. We have our own private room in the ER now. They see us coming and just wave , not a good thing .

It is ALWAYS a good idea to get a second opinion. We are so happy the second Radiologist caught this and we avoided surgery .

Grace's eye is still about the same . She went to Lacrosse practice on Sunday and her Doctor was not very happy with her yesterday . She said she should not be doing anything until her eye is completely healed . She still has bleeding in the back of her eye and the retina is still detached . She is suppose to limit her reading also. She equated this to mean , no school work , I don't think so .
She is still having her eye re checked every few days at Hopkins to monitor it . Hopefully it will improve so she can avoid surgery too.

Thank you everyone for your thoughts and prayers for the girls and a GREAT Big "Thank you " to Grandmom for helping Ed with the girls at home .

Emergency surgery

Please pray for Lucy . The stomach flu we thought she had turned out to be her appendix . having emergency surgery .

Christmas on The Potomac

Today we had a wonderful day at The National Harbor with Eddy and Laura and "The Girls".
So many fun things to see and do.

The part the girls LOVED the best ...snow falling inside .

Teresa gets sooo excited when she sees Santa. Unfortunately , we were not allowed to take ANY photos of Santa. You had to pay an enormous fee to buy their photo. So I guess you will have to use your imagination on how cute everyone looked sitting with Santa. Santa asked Gemma if she wanted a Barbie Doll. She looked at him and said "NO". But he quickly regained favor with her when he said ," Well how about a Strawberry Short cake doll?". This is her FAVORITE doll. ( i think because she represents food ).

The girls also mailed their letters to the North Pole for Santa. The girls each had a volunteer to help them write their letter. As Teresa was mailing hers I noticed what was written ...Dear Santa, A Beauty and The Beast Doll , a New Heart and a castle . Love Teresa

We have never spoken openly in front of Teresa about her heart or lungs , but I think she somehow knows what is going on . She associates all hearts (on necklaces or drawings , even a leaf in the shape of a heart ) as "her heart ". When I think of ALL the children in the world asking Santa for just Toys (mine included), it really puts a different perspective on the meaning of Christmas when a child knows they need something other than toys . I wish Teresa had that innocence to JUST want toys for Christmas .

We are so "Thankful" for another wonderful day filled with memories to last a life time.

Happy Thanksgiving

Happy Thanksgiving! I hope everyone had a wonderful time with friends and family !!

All of our kids came home for the Holiday . Paul and his fiance Meg, came home from Georgia and Alex and his girlfriend Taylor , came home also . Eddy unfortunately had to work (he is a police officer ) but he and Laura came over Friday to help cut down our Christmas tree , decorate outside and have Dinner. There is nothing better than having all of your children home at the same time ! All 12 of them !!!!!

Unfortunately our Thanksgiving did not start out great. Grace was hit in the eye by a BB gun on Wed. evening. We spent the night in the pediatricians office and then the Hopkins ER. We had to return on Thanksgiving to have her eye re checked. Poor Ed had to do most of the cooking and cleaning .

Her eye has a scratched cornea ,Retinal hemorrhage, bruising and tear on the retina. She has to return to Hopkins every other day to make sure the tear is not worsening. If it starts to separate more , she will require surgery .

Then Lucy started with a stomach virus. Every time one of the girls gets a virus , life becomes a little more stressful. It's a waiting game to see if Teresa will get it .

So far Teresa is doing very well on her new meds. .
She is getting ready to celebrate her fifth Birthday and is so excited about having a Party all for her ! I think she has decided on a "Princess" theme.

Enjoying every minute of life...

Trying New Meds.

It was a very long day . Friday we went back to CHOP for Teresa to meet with her new Doctor in charge of pulmonary hypertension . She is being transitioned from her HLH Cardiologist to the pulmonary hypertension team. This is definitely a step in the right direction . After a long day of testing, we met with Dr. H. to go over the results and talk about Teresa's future plans for treatment.

Two months ago we were ecstatic with hope of Teresa's lungs showing signs of improvement. Friday things were a little more subdued. Several major events need to take place before we can really start to look at the options for hope of a long future .
Teresa has two major issues of concern . The first, her heart needs to be repaired or have a transplant. It will not function forever in the condition it is now. She is already on very high doses of meds. for heart failure. The second issue, her lungs are severely damaged from 5 years of extremely high pulmonary pressure. The state they are in now , would not sustain a heart transplant or any kind of heart surgery . Up until 2 months ago we were told she was inoperable. But now her lungs are showing signs of slight improvement. Dr. H said he is an optimist but at the same time very realistic. He doesn't want to offer us false hope but he also does not want to take away what little hope we have. Optimistically speaking , he wants to start 2 new meds. for her lungs and in 3 months see if they are helping her lungs to improve. IF her lungs show further signs of improvement, THEN we could discuss the option of transplant or repair surgery . Realistically speaking, he is not sure IF she will ever get to that point. Right now he said he is trying things outside the realm of what are possible. He feels she has very little reserve to fall back on and without her lungs improving she is headed for catastrophe . Her lungs could continue to improve slightly but never reach the stage they need to be at for a transplant. At that point he felt she would have MAYBE two more years of life .
But the way I look at it ... one year ago she had NO HOPE, at least now we are slowly working towards the potential for HOPE. With out hope , life is VERY hard. Everyone needs hope .

As Ed and I sat there and listened to Dr. H as he explained all options for Teresa ,I had an unusual sense of peace as he was talking . A year ago this would have really upset me . But I have seen so many miracles take place in Teresa's life already. I KNOW God is healing her lungs and will provide what is best for Teresa's life to fulfill her purpose here on earth .
God has always provided for Teresa what ever she needed and I know He will provide for her now . She is already a living miracle.

Teresa could not wait to get home and tell everyone how she did not cry when she had her blood test. Gemma had her blood transfusion Thursday and Teresa always holds her hand and tells her not to cry ( it never works though , Gemma always screams ). Gemmma was not so happy to hear of Teresa's bravery .
One of Teresa's favorite movies is High School Musical .Guess who is her favorite character? Sharpey! She has the walk , talk and attitude to show for it too. In the Hospital the Echo. Tech. made the mistake of saying how he liked her bag. (she carries her little pink purse on her shoulder ,she was wearing her favorite pink dress with her red sparkle shoes and when she walks she flips her hair with her hand ). So as the tech. said this, she did a 360 turn , flipped her hair and in her best Sharpey voice said ," It's NOT a bag , it's a purse". ALL the nurses started laughing so hard, I had to apologize for her little attitude. But it is this attitude ,her strong will and love of life that make her such a special little girl . She is one very determined little girl who knows exactly what she wants and who by the way gives the best hugs and kisses!

Please , if you could help us to pray for Teresa's lungs to show continual signs of improvement and her heart to stay strong . As always we are eternally grateful to everyone . We are so happy to be celebrating our second Christmas with Teresa and another Birthday with her in our family !

Back to normal ?

I think we are back in the swing of things again. It took a week to feel like we were back to our normal routines after coming home from the hospital twice in one week . The girls have had a lot of Doctors appointments over the past 2 weeks and it has kept me running back and forth to Hopkins several times each week . But all is good and we are very grateful for that.
Mary continues to heal wonderfully . Lucy had a little bit of the virus Gemma had but she has started different meds. for her lungs and she is feeling much better . Emilia will celebrate her 8th. Birthday on Monday . ( Yeah ) She will be getting her service dog(Mayzie) in January and is very excited. She is having more surgery on her legs in the spring and Mayzie will help her while she is in her wheel chair and with PT. Gemma goes back for her blood transfusion on Thursday and is feeling much better this week. Her school provided her with a speaking device that helps her to communicate better. She was so excited , the first thing she said in a complete sentence... "This is my talker it helps me to speak. I am happy . I like to eat. I want to go to restaurant and eat chocolate ". She even picked the voice she liked. It is absolutely amazing . She has sooo much she wants to say . Teresa has once again miraculously avoided the virus that Gemma had and then Lucy . God continues to protect her. We are going back to CHOP on Friday to start all her new meds.

As Christmas is quickly approaching , I am so "Thankful " we will have Teresa with us to Celebrate her second Christmas. Last year all her Doctors never thought she would get to this point of her lungs starting to respond to oxygen . In less than one year she could actually be listed for a heart transplant! We are praying her heart will stay strong and she will continue to avoid any viruses . She has very little reserve to fall back on .

Last night our wonderful friends , Vicki and D'Ann had a fundraiser to help us with Teresa's medical expenses. Our community , Family and Friends all came out to help . I had never experienced a Quarter Auction before. It was fast ,loud and A LOT of FUN !!! Thank you everyone ! We were very touched by everyones love and support.